Friday, January 21, 2011

It's All Just A Coincidence

I need to start this by saying that if the link between XMRV and ME/CFS is eventually disproven, then we all have to accept that (like I should have to start with a disclaimer, but we also have to accept that we are apparently viewed as being a patient population incapable of anything but groupthink, which of course NEVER happens amongst scientists). However, we have scientists (Salzburg and others, as well as the “Science-Based Medicine” blog) writing that this is so, already, and less than a month after a respected and accomplished virologist stated at a meeting of a major governmental agency that he sees strong evidence for an association (Harvey Alter, of course). I suppose it’s not all that odd that scientists would disagree on this—it’s what I would expect. But to this degree? A scientist claiming that consensus has been reached when the Blood Working Group hasn’t reported anything remotely definitive? Prior to results on the Lipkin study being announced? (Is that study even underway?)


No matter, science and medical blogs, few yet apparently influential, have already declared that there is no link; it’s been disproved; game over. Others have said that for some time now. Such declarations go viral, tweeted and retweeted. And others take it as…fact? I don’t know. But I question how much those who think enough of the opinions of these people to link to their blogs examine the issue remotely critically. If they even bother to look at the issue—are they content to simply take the position that if this or that scientist, doctor, or blogger, takes this position, that it’s likely the correct one? Of course, I don’t know, especially since these are often the sorts of people who are very quick to point out if/when someone with an opposing point of view offers an argument that represents an appeal to authority. But I wonder, regardless of how valid such a statement may be, because I have no real evidence with which to declare someone a total f*cking hypocrite.


On the other hand, blogs and forums in favor of an association, causal or otherwise, also put plenty out there making substantial use of social media. Some operate on the pre-conceived notion that a link is definitive. Most, in my experience, are cautious enough to state specifically that we can’t say this yet, on the basis of a lack of scientific consensus. But there’s a difference here. Most of the people doing this are not scientists, not doctors, not recognized as experts, lacking the proper education and training (so, apparently held to a standard higher than what SBM & the like care to bother with). They are, however part of a much-maligned patient population, one that has faced wide dismissal of this illness; scorn, suggestions that it is…fill in the blank. Psychological, psychiatric, psychosocial, somatization, psychogenic, psychosomatic. Biopsychosocial. Somatoform Disorder. Whatever. You know the drill. Books could be written about just this, but that’s not why I’m writing this.


There has been some nastiness on both sides of this debate. Among those who see no link, the social media of the pro-XMRV patient population is a problem. A matter of uneducated and unqualified people with an inability to approach this with any objectivity, engaging in conjecture that might involve pseudoscience (if not a textbook example of Dunning-Kruger Effect). On the other side, regardless of education and/or training, the patient population looks to guidance from a few people who actually were scientists and doctors before becoming ill; and most of us know damn well that even though not qualified medically, we have learned more about this disease than most doctors seem to want to bother with.


It’s no substitute for a medical degree, but there is far too much in the way of reports of patients having to try to educate their doctors about it for this to not be looked at as a very real problem. This is, of course, complicated by the issue of doctors tending to turn to the CDC as a resource, and the info supplied there being, well, let’s just say questionable (although I would go so far as to say that the website is atrocious, and some—much?--of the stuff written into their published research is a stinking pile of outrageous bullsh*t). Think about the idea of trying to persuade a doctor, let alone a skeptical one, that the Canadian Consensus Criteria should be given more weight than Fukuda, or the CDC’s representation of the Empirical (or “revised Fukuda,” when the CDC isn’t arguing that this actually means that Fukuda is a revision of Holmes…ugh) as Fukuda.


Was I saying something about ‘appeal to authority?’ Ah…never mind.


I don’t expect that those who see no link will accept that there has been an overreach, a disproportionate response to this hypothesis: in their view, Judy Mikovits is this, she’s that, ‘this’ and ‘that’ representing various negative judgments. On the other ‘side,’ any criticism of Dr. Mikovits is unacceptable. I am more sympathetic to this viewpoint, especially taking the big picture into consideration, but this is not an absolute. Nobody is perfect; everyone is human. Everyone makes mistakes. Do I think Dr. Mikovits is onto something? Yes, of course I do. Do I support her? Yes, I do--firmly. Am I willing to say that I see this as being settled? No.


That would not be a reasonable position, even if there are flaws with the published negative XMRV studies, even if not one study to date has examined the same patient cohort (Fukuda + CCC) as Lombardi et al (though the Holmes cohort in Lo et al is probably closest, if not identical). An example of a potential parallel often mentioned by pro-WPI patients and bloggers is that of ulcers and what it took for scientific consensus to debunk the stress-as-causation theory. But it’s another aspect of that example that needs to be considered, whether right or wrong (wrong): it wasn’t until ‘scientific consensus’ was actually achieved, that it became, well, scientific consensus. It didn’t matter what Marshall or anyone knew. It didn’t matter how wrong anyone was who opposed his views, his research. That is to say—of course it mattered…but I’m framing this in the context of ‘science.’ To ‘science,’ it didn’t matter what happened, or how long, until Marshall was proven right. Scientific consensus is scientific consensus, period. Regardless of what we know, or what we think we know, or what we KNOW we know. It’s not our minds that have to change.


We didn’t need much convincing, because what was described made so much sense to us: a lot of very sick people...and one hell of a virus--a retrovirus. The hard part is changing the minds of the People Who Matter. This endeavor has proven more difficult than I think most of us would have thought—while I think it would have been naive to not expect attempts to challenge Lombardi et al, there seem to be an awful lot of people who want to pretend that Lo et al doesn’t even exist. So, we’re a long ways from consensus, or anything close to it, in spite of any expectations we may harbor.


I support the WPI, regardless of what I’ve seen in the way of criticism towards them that I initially thought might have had some merit. I like the idea of healthy skepticism, but I think a lot—perhaps most--of the skepticism on XMRV is anything but healthy. For me it highlights that skepticism, much as I like the idea of it, is not the only reality. There are too many people who wear the badge of being skeptical—as though this describes something somehow unique--that seem to feel that only they are capable of examining evidence, as opposed to the rest of the uncritical rubes out there who would fall for any silly claim.


There’s far too much unhealthy skepticism on ME/CFS in general, so it shouldn’t be lost on anybody that some of those most skeptical on XMRV are also skeptical on ME/CFS, generally, or otherwise. Yes, even today. So, it’s no reach to say that the criticism directed at WPI is rather disproportionate, in my biased and and unscientific opinion. And if I were able to view the big picture with total objectivity, would I think Dr. Mikovits was onto something, based on the two published positive papers, and the questionable response in the past six months or so alone? I think I would.


Why?


In late June, it was reported that at a blood products conference in Zagreb, Croatia, Harvey Alter, of the Office of Transfusion Medicine at NIH, had a presentation in which, leaked slides, revealed, the findings of the WPI in Lombardi at al were ‘likely true, despite the controversy.’ A percentage representing healthy carriers was roughly double what was published in Science. That’s a big problem if your job is to keep tabs on the safety of the blood supply. And details of this leak were reported, fairly widely, perhaps most prominently in the Wall St. Journal, where Amy Dockser Marcus had begun a series of blogs paying more attention to the story, especially since a blood organization had issued a recommendation that Chronic Fatigue Syndrome patients be deferred from donating blood—a non-binding but nevertheless significant statement.


If you’re reading this you probably know about this; that the paper Alter referred to in his presentation was due for publication in PNAS, but withheld at some point, likely during the week that followed the reports of the leaked slides; that it was reported that the CDC also had a paper about to be published, and that that paper was withheld as well. You might also know that the CDC paper was published the day after that report appeared—very, very early the following day. That all of this was widely reported.


Maybe you know that an email rumor was spread very late in June alleging that the UK government, or a quasi-governmental entity, had decided that there should be limited or no coverage of XMRV in the UK press from that point forward.


And how much coverage was there? Well, there was a piece in the Independent in July.


http://www.independent.co.uk/news/science/study-that-solves-chronic-fatigue-syndrome-blocked-2022195.html


In it there was the following paragraph:


“Patients' groups fear there has been a conspiracy to suppress data in support of the idea that chronic fatigue syndrome is caused bya viral infection. However, scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV.”


So, it wasn’t published in that form; there were reportedly additional experiments undertaken to satisfy qualms that the paper was flawed. Some would say that not all of the additional experimentation was done that some would have asked for; others might argue that this issue involves a potential threat to the blood supply, and bringing more attention to that potential threat as a public health issue overrode whatever concern may have existed to err on the side of not publishing a supposedly flawed paper. And it was published, weeks later, on August 23rd.


It could be the subject of another post how the CDC unveiled a new CFS website during this period, and how a paper that had been submitted nearly a year before called “Personality Features and Personality Disorders in Chronic Fatigue Syndrome” was published in this time frame. The website highlighted the ‘childhood adversity’ research that the intrepid CDC has graciously spent our tax dollars on (still does), and, for a time, offered a prominent & direct link to their negative XMRV publication (which currently points to a subsequently-added XMRV page, which is good in case anyone were to read that paper, especially the part that explains away the difference between Fukuda & CCC). Let’s just say that none of this appears inconvenient, but beyond that, this is not specifically the point of this post.


When the PNAS paper was published, it was widely reported, here in the U.S., and elsewhere; there was a press conference, and there were a lot of headlines. Except in the UK. Is it possible to question why without sounding like a conspiracy theorist? I must confess, I used to care about this more than I do now, because it strikes me that the interests of most of those who are involved in researching this condition over there are actually less well-served by what appears to be a strategy than if they chose a more open approach. Yes, that’s a reference to the Science Media Centre and that Simon Wessely is a member of that panel. And how Wessely & his colleagues, as well as the CDC, might just end up looking far worse for vigorously contesting an association now. Because, as bad as they would look admitting they might have been wrong all these years, how much worse will they look if they’re proven wrong after they had the opportunity to move towards a possibility we do think they will be forced to acknowledge?


Okay, with that out of the way…how was the August PNAS publication reported in the UK?


It is my understanding that there was no mention of it in any print edition of any newspaper, although I cannot personally confirm that. But…online? Well, there was a piece in the Daily Mail:


http://www.dailymail.co.uk/health/article-1305691/Chronic-fatigue-syndrome-caused-mouse-related-virus.html

There was also mention on a site or two that would rise to a level above what one would consider, at least in terms of personal blogs from patients and advocates, an aggregator or two, and pieces in publications such as Nature and New Scientist.


http://blogs.nature.com/news/thegreatbeyond/2010/08/delayed_chronic_fatigue_syndro.html


http://www.hc2d.co.uk/content.php?contentId=15883


http://www.newscientist.com/article/dn19361-virus-link-with-chronic-fatigue-syndrome-resurfaces.html


http://www.privatehealth.co.uk/news/august-2010/study-could-revolutionise-me-treatment-32802/


Not much beyond these, although, if someone wants to correct me on this, go right ahead. Oh, yes, there was a comments section in the Guardian (notable as the outfit responsible for carrying pieces by certain figures, such as “Dr. Crippen” and Spiked’s Michael Fitzpatrick, for starters, but we don’t want to get into THAT, now, do we?) that was sort of overrun with people who were apparently quite irate that they had not so much as bothered to mention Lo et al:


http://www.guardian.co.uk/news/datablog/2010/aug/25/stds-england-region-gender-ethnicity-statistics


Does this sort of thing happen often in British journalism? From here, it looked downright bizarre, although of course not as bizarre as the story not being reported in the first place. The Guardian then responded with this


http://www.guardian.co.uk/world/feedarticle/9237473


Ah…they decided, three days later, to pick up an AP feed on a story they had previously found unworthy of mention…better late than never, I suppose.


Responding to complaints about this, Dr. Charles Shepherd of the ME Association said something about…this news broke in the US, five hours behind Great Britain, and by the time the press conference happened, reporters were no longer at their desks…and the following morning it was too late, and no longer newsworthy…wow, that is some weak-assed bullsh*t. GMAFB.


I should point out, without going into great detail, the publication of Lombardi et al in Science in October 2009 did make major news in most if not all of the major UK newspapers; and the publication in early 2010 of the three negative studies likewise garnered some notice, though, to be fair, unlike both the WPI and Alter/Lo papers, these were all UK, not US, studies, in one respect or another. Still, it did seem just a bit odd, particularly if one looked at the email rumor as being conspiracy-fueled nonsense, that a story at least as big, if not bigger, than Lombardi et al was ignored so roundly in the UK.


Why would it be as big, if not bigger? After all, as some noted (brilliant move), Lo et al did not find “XMRV.” Oh, they only found something VERY MUCH LIKE IT. But it wasn’t “XMRV,” therefore, as the logic followed, it did not validate the WPI’s hypothesis. For those of us living on the planet Earth, however, hearing Harvey Alter state, and repeat, that this paper confirmed the WPI’s study was quite meaningful. Knowing the paper itself said that it supported the central argument of the original paper…this had never happened before. And that might be what made this so big, and I don’t say that to minimize Lombardi et al in any way, shape, or form. It was a validation, from FDA & NIH researchers, no less, that Elaine DeFreitas never received. I think it’s safe to say that by working with NCI and the Cleveland Clinic, that Judy Mikovits took a valuable lesson away from how DeFreitas was treated, which foreshadowed how nearly 20 years would be mostly lost in the thimble-sized world that is ME/CFS research. One awash with a brand of psychiatry that I would pointedly characterize as inferior to anything Lucy van Pelt would offer to Charlie Brown when ‘the doctor is in,’ and one that this time around is having a football yanked away from them, rather than the other way around.


As of this writing, there have been no further positive studies published linking ME/CFS to XMRV, or anything related (hat tip to the ‘terrorists of health’ genius at Psychology Today, among others, for introducing the idea that…oh, never mind). There have been studies that have served to cast doubt on the association, with one or two being published in October. How did the UK press report on those? To be honest, I didn’t look at that when putting this together. So let’s say, for the sake of argument, that they were covered as sparsely as was Lo et al, or even not at all.


Fast-forward to December. Following the decision of the American Red Cross to indefinitely ban Chronic Fatigue Syndrome patients from blood donation; and following the FDA’s Blood Products Advisory Committee meeting a couple of weeks later, where the panel, after hearing presentations on both sides of the issue, voted in favor of recommending that the FDA similarly ban us from such action. Retrovirology, the journal that published Groom et al in February, and the CDC’s negative paper in July (am I missing any?), published four on the same day. The conclusions of these papers were that it’s very easy to contaminate an XMRV study; it seems that’s what happened to Brigitte Huber (who apparently decided that because it happened to that study, it must be what happened to Mikovits as well). Ah, but one went past these conclusions: Hue et al states that “We propose that XMRV might not be a genuine human pathogen.” Now, saying much on the technical merits of these papers is outside my purview, but I do think it’s notable that this statement was based on techniques used to find XMRV in blood. Since the Cleveland Clinic worked on prostate tumors, I think it’s safe to say they’re not exactly thrilled with this (to which Craig Maupin's interview of Eric Klein in The CFS Report can attest), but, regardless…


These papers got fairly wide coverage. There were accompanying press releases, and they were broadly

disseminated. Okay, fair enough. Previous studies, as I mentioned, were well-covered. But I don’t think it’s unreasonable to say that there was a quote in a press release that went beyond the bounds of what was actually determined from the papers themselves: Greg Towers stated in the Wellcome Trust press release that “XMRV is not the cause of Chronic Fatigue Syndrome.” Yes, that bald-faced. Hmmm.


Here is an example of a piece that I would have to describe as relatively fair, in spite of the placement of that quote towards the top; it did at least also quote Ian Lipkin saying that it would be premature to rule XMRV out at this stage. I say relatively fair, because I don’t expect much from the press on this—and that’s not a reflection of what I think of these publications based on my limited understanding of the science (more accurate would be to say that I think it’s a bunch of horsesh*t, but, hey, who asked me).


Bloomberg: http://www.bloomberg.com/news/2010-12-21/mouse-virus-link-to-chronic-fatigue-syndrome-is-challenged-in-four-studies.html



A couple of others:


WebMD: http://www.webmd.com/chronic-fatigue-syndrome/news/20101219/chronic-fatigue-syndrome-not-caused-by-xmrv


UPI: http://www.upi.com/Health_News/2010/12/21/XMRV-not-chronic-fatigue-syndrome-cause/UPI-77671292907694/


Today’s Vital Health: http://todaysvitalhealth.com/chronic-fatigue-syndrome-not-virus/



Here is the press release itself (I only include these links so that if one wants they can verify my representations, or not, not because I think they’re so much as worth spending a click on)



Wellcome Trust Press Release: http://wellcometrust.wordpress.com/2010/12/20/chronic-fatigue-syndrome-is-not-caused-by-xmrv/


Sanger Institute: http://www.sanger.ac.uk/about/press/2010/101220.html


Wellcome Trust, reprinted: http://www.wellcome.ac.uk/News/Media-office/Press-releases/2011/WTX064078.htm



Hmmm. Why the need to reprint it? I suppose they felt they didn’t get enough coverage. Here’s a sampling of pieces from outlets that reported on this (and, ODDLY ENOUGH, chose not to cover Lo et al, with the exception of the previously-noted, after-the-fact issuing of the AP’s coverage in the Guardian):


BBC: http://www.bbc.co.uk/news/health-12041687


Independent: http://www.independent.co.uk/news/science/me-virus-was-actually-a-lab-mistake-study-says-2165491.html


Guardian: http://www.guardian.co.uk/society/2010/dec/20/chronic-fatigue-me-research


BMJ: http://www.bmj.com/content/341/bmj.c7358.extract


Reuters (UK; they may have covered Lo et al in the US) : http://uk.reuters.com/article/idUKTRE6BJ36I20101220



Hmmm.


Much has been made of the quote Professor Vince Racaniello gave to the Chicago Tribune, since retracted; this is probably worthy of mention at this point, that someone, well, qualified, looked over the papers and their first inclination, when asked, was to tell a national newspaper that the publications represented…oh, never mind. It’s been repeated in enough places. More notable, at least at this point, was a UK-specific piece that is truly odd.


NHS Choices: http://www.nhs.uk/news/2010/12December/Pages/chronic-fatigue-syndrome-xmrv-virus-disputed.aspx


This piece was very friendly to the press release version of the Retrovirology publications. That didn’t exactly shock me. But…a rating of one star, based on nearly 75,000 ratings? Do you mean to tell me that the NHS puts out a publication that allows votes without regard to how many votes have been received per IP address? Okay…big deal, but still…can you imagine the FDA doing that? The CDC? NIH? Medicare? Bizarre. Of course, it would nevertheless have been branded with one star once ME/CFS patients (and hopefully those with enough common sense to see that if the papers had actually reached a conclusion supported by the language of the press release, that it would have been far bigger news than it actually was) came across it, but who knows by how many people?


Well, we don’t know, and it doesn’t matter. What does? That Judy Mikovits and the WPI had previously been the target of accusations of doing science by press release? Naw. That doesn’t matter. Because, I suppose, that’s what they did, while the NHS was merely reporting the news.


I suppose.


That was a very interesting piece the NHS ran. In a country that saw fit to all but ignore Lo et al, that NHS piece got reprinted. Verbatim. A lot. Ah, but only one copy-and-paste job survived the original NHS Choices headline, which was


“Chronic Fatigue Syndrome ‘not virus’”


NOT what it was later amended to.


Here is a link to that:


Yorkshire Evening Post: http://www.yorkshireeveningpost.co.uk/nhshealth/Chronic-fatigue-syndrome-39not-virus39.6668458.jp


Meanwhile, although the UK banned ME/CFS patients from donating blood, for the unique reason that it had nothing to do with a potential threat from what could possibly be an infectious retrovirus, but to protect the health of the patient…yes. They, a collective ‘they,’ decided that this NHS story was important. Very important.


The last time I checked—a couple of weeks ago—that NHS story had been reprinted verbatim in no less than 25 additional publications. Got to get that story out there, eh? I list them here only because I don’t think I would believe that if someone told me that, not after NOT covering Lo et al. Not without checking, anyway. So:


Thorne & District Gazette: http://www.thornegazette.co.uk/news/health/behind-the-headlines/chronic_fatigue_syndrome_virus_doubt_1_2874674


Worthing Herald: http://www.worthingherald.co.uk/news/health/chronic_fatigue_syndrome_virus_doubt_1_2200412


Chichester Observer: http://www.chichester.co.uk/news/health/chronic_fatigue_syndrome_virus_doubt_1_2200412


Littlehampton Gazette: http://www.littlehamptongazette.co.uk/news/health/chronic_fatigue_syndrome_virus_doubt_1_2200412


Leighton Buzzard: http://www.leightonbuzzardonline.co.uk/news/nhs/chronic_fatigue_syndrome_virus_doubt_1_2200412


Bearsden Herald: http://www.bearsdenherald.co.uk/news/health/behind-the-headlines/chronic_fatigue_syndrome_virus_doubt_1_425328


Sleaford Standard: http://www.sleafordstandard.co.uk/news/behind_the_headlines_2_6775/chronic_fatigue_syndrome_virus_doubt_1_2200412


West Sussex Gazette: http://www.westsussextoday.co.uk/news/health/behind-the-headlines/chronic_fatigue_syndrome_virus_doubt_1_2200412


West Sussex County Times: http://www.wscountytimes.co.uk/news/health/behind-the-headlines/chronic_fatigue_syndrome_virus_doubt_1_2200412


Sunderland Echo: http://www.sunderlandecho.com/news/health/chronic_fatigue_syndrome_virus_doubt_1_2874674


Milngavie Herald: http://www.milngavieherald.co.uk/news/health/behind-the-headlines/chronic_fatigue_syndrome_virus_doubt_1_425328


Shoreham Herald: http://www.shorehamherald.co.uk/news/health/chronic_fatigue_syndrome_virus_doubt_1_2200412


Bedford Today: http://www.bedfordtoday.co.uk/news/health/chronic_fatigue_syndrome_virus_doubt_1_2200412?action=logout


Isle Of Man Today: http://www.iomtoday.co.im/news/uk-health-news/chronic_fatigue_syndrome_virus_doubt_1_2874674


Kincardineshire Observer: http://www.kincardineshireobserver.co.uk/news/health/behind-the-headlines/chronic_fatigue_syndrome_virus_doubt_1_425328


Peterborough Today: http://www.peterboroughtoday.co.uk/news/health/behind-the-headlines/chronic_fatigue_syndrome_virus_doubt_1_2200412?action=logout


Harwich and Manningtree Standard: http://www.harwichandmanningtreestandard.co.uk/families/print/Chronic_fatigue_syndrome_virus_doubt.nhschoices.a36144f4-d0c7-4c13-a5ca-a5a39bf25744/


Times Series: http://www.times-series.co.uk/families/national/healthnews/8750768.Chronic_fatigue_syndrome__not_virus_/


Deeside Piper: http://www.deesidepiper.co.uk/nhshealth/Chronic-fatigue-syndrome-39not-virus39.6668458.jp


Sheffield Telegraph: http://www.sheffieldtelegraph.co.uk/news/health/nhs/chronic_fatigue_syndrome_virus_doubt_1_2874674


Burnley Express: http://www.burnleyexpress.net/news/health/chronic_fatigue_syndrome_virus_doubt_1_2874674


South Wales Argus: http://www.southwalesargus.co.uk/families/print/Chronic_fatigue_syndrome_virus_doubt.nhschoices.a36144f4-d0c7-4c13-a5ca-a5a39bf25744/


Scotsman: http://living.scotsman.com/nhshealth/Chronic-fatigue-syndrome-39not-virus39.6668458.jp


Halifax Courier: http://www.halifaxcourier.co.uk/newsfront.aspx?sectionid=13678&IsTopic=1


Wharf Valley Today: http://beta.wharfevalleytoday.co.uk/health-news-from-nhs-choices/Chronic-fatigue-syndrome-39not-virus39.6668458.jp



Very important story! Good job NHS! Remember, ME/CFS patients are just a bunch of sheep incapable of anything but groupthink!


It's all just a coincidence!


Of course, these look to be relatively local publications. They’re not the Times, not the Independent, not the BBC. But regardless, this looks mighty selective to my untrained eye.


More:


“Talk Talk”: http://www.talktalk.co.uk/lifestyle/healthfitness/news/article/latest/chronic-fatigue-syndrome-virus-doubt/%7BA36144F4-D0C7-4C13-A5CA-A5A39BF25744%7D


“NetDoctor”: http://www.netdoctor.co.uk/interactive/bth/article.php?id={A36144F4-D0C7-4C13-A5CA-A5A39BF25744}&tab_id=224


And, because it’s also important to get that story out to people who need to know (in case they were esconced in a cave somewhere in Mongolia the week before Christmas):


British Blood Transfusion Society: http://www.bbts.org.uk/news/details.cfm?h=1&newsId=496


Nursing Times: http://www.nursingtimes.net/whats-new-in-nursing/behind-the-headlines-archive/chronic-fatigue-syndrome-virus-doubt/5023651.article


I’m sure I’m not the only one warm-hearted at the diligence of the NHS to provide an important message accurately to folks. And I have a feeling they will continue to do so, unless, of course, something comes along that leads them to feel the need to provide a message they apparently view currently as unimportant, inaccurate, or both.


So, tell me: is there something really f*cking strange going on here, or am I just whistling f*cking Dixie?

21 comments:

  1. Exellent...so much information in one place....making it easier for the sufferer or the general obsever. Thankyou Jack.

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  2. Impressive amount of research you've done here - will provide excellent material for others. Clearly so much wrong with the UK media. Thank you!

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  3. Thank you for all those links! I cannot imagine how much work that took.

    The formal view is better from my side of the Pond - have hope. The long history of censorship and propaganda regarding M.E. Is about to end.

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  4. Well, that was thorough! Thanks for blogging!

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  5. WOW! a sure TOUR De Force! Nice work, Jay! Here is a test for all your readers. If you can read this post, and the links, and UNDERSTAND all this info, in less than one week's time, then you do NOT have M.E. This long term M.E. patient is way too mentally compromised to digest all this. At least at once. But, Job well done! TMH

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  6. If anyone wants to know anything - then yours is the Blog - I shall save this somewhere & dip in & read a bit at a time. Thanks for Blogging.
    @ Mary I do hope so

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  7. "I support the WPI, regardless of what I’ve seen in the way of criticism towards them that I initially thought might have had some merit."

    I'm glad you had a change of heart/mind. I read just this morning that the Whittemore-Peterson has not been able to get a single grant since the Science article. I think that the ongoing criticism of them by some in the ME/CFS community doesn't help matters. Thanks for the blog.

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  8. Wow! What a fantastic blog. Thank you so much. The extent of your research is truly impressive and you have summed up the pathetic - and dangerous - approach of the NHS and UK media on this subject to a T. I can tell you at this point that I am ashamed to be British. Any journalist who complies with the Science Media Centre's anti-ME/CFS propaganda is complicit in the medical and social abuse of ME patients spanning 25 years and more. It is nothing short short of criminal. Please keep blogging.

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  9. I believe and have from the begining in the WPI , the UK media will have egg dripping all over there faces !! Thanks so much for all the hard work you have done !!!!

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  10. As Mary said Great Job...Who did this and posted
    Thank you
    Meghan-Morgan Shannon Medical Prof...

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  11. In response to the publication of the 4 "contamination" papers on 20th December and the biased UK media/NHS coverage of the statement in the Wellcome Trust Sanger Institute press release, some patients set up a global campaign to raise funds for the WPI for Neuro-Immune Diseases.

    The idea is to donate a small amount, or whatever you can afford, on the 20th of each month, in the hope that a little from each of us every month will add up to a lot.

    The campaign is called COUNT ME IN and was launched on 20th January via an event on Facebook.

    If you think this campaign is a good idea and would you like to show your support for The Whittemore Peterson Institute for Neuro-Immune Diseases in their mission to find the true cause and a cure for neuro-immune disease then click YES on this event page to say, “COUNT ME IN”, and see the links for donation.
     
    http://www.facebook.com/events/create.php?eid=184091031613668#!/event.php?eid=104227606318513&index=1

    Donations are made direct to WPI via their website (they will be setting up a facility to make recurring monthly donations in due course in response to patients' request) or via Cure 4 ME Causes on Facebook.

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  12. In response to your last question: there's something really f*cking strange going on here. I don't have much hope that the politics will go away anytime soon, but fingers crossed.

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  13. You aren't just whistling "Dixie." There is something very strange going on with M.E., both in the U.K. and in the U.S.

    Patricia Carter
    24 years M.E.

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  14. This amazingly complex but complete documentation of the UK's crimial actions against ME patients will be critical when the day comes to hang them forever.

    The time is coming, as Mary said. It may be a year, but I've waited 22; what is one more.

    Thank you for the extensive work...great job!

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  15. Thank you for the wonderfully thorough post. Bravo!

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  16. Thanks for blogging! So many nuances in the news, and in the news about the news, and in the discussions of the news about the news.

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  17. Thanks for this informative and well-researched post!

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  18. Thanks for the information in this blog! The same strange thing is happening in the Netherlands.....I hope we can change that.

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