Monday, October 24, 2011

Rituximab and the Press


Recent events have reminded me of Dr. Marcus Conant's admonition "Do not trust the press. They are not your friends". According to Dr. Conant, a veteran (and great, selfless hero) of the wars on AIDS, the press has their own agenda - and they do not have our interests in mind.

At this moment we have to ask ourselves a question. Why has there been so little mainstream news coverage of the Norwegian rituximab study and ME? In the last few days, the Norwegian rituximab study with ME is seeping very slowly into the mainstream. But it is small potatoes compared to the flood of crap vomited worldwide in the supposed demise of a retroviral involvement in ME. (Incidentally this retroviral story is not over. Dr Mikovits and others will resurface and continue their research into HGRVs. And it is worth remembering that Dr. Mikovits was early on in Norway trying to find out about these cancer scientists and Rituximab. Dr. Mikovits has always been open to suggestion.)

It is one thing for the press to ignore a story. It is quite another to frame out a story incorrectly - especially if it masquerades in the same phony guise that ME has been characterized for the last 25 years. This becomes tiresome - and disingenuous. These hapless press stories of the past two years lead nowhere. They can just be heaped up with all the other ME dodges of the past.

It is not true that any press is better than no press. A truthful story line is important. I wrote a post on this subject some months ago called The Story Line.

In the last year, four mainstream journalists - Amy Marcus, David Tuller, Trine Tsouderos, and Michelle Fay Cortez - have decided to get involved with the retroviral association to ME story - each for "their own reasons". All of them have developed the sometime habit of writing about ME. Each goes in a different direction, each with no cohesion of story. Why is this so, Marvin Macy? For the rest of us the reason for these disconnects is especially unclear right now. The neglect in covering the Rituximab study with ME calls into question all these journalists' previous motivations. It makes us suspect. What was their agenda? What were they really interested in?

In the last few years something quite different (than what is depicted in the press) has been going on in the research and treatment world of ME. In the last few months, amidst the worldwide , hyperbolic "take out" of retroviral research into ME, various other researchers have been plugging along - and expanding their interests. These include Dr. Jose Montoya at Stanford (in collaboration with Dr. Ian Lipkin at Columbia), the newly announced Chronic Fatigue Initiative at Harvard, Columbia (again Lipkin) and Duke, financed by the Hutchins Foundation, the impending opening of a treatment and research center at Mount Sinai in NY with Dr. Derek Enlander as one of the clinicians, the Simmaron research group of Dr. Daniel Peterson and associates in alliance with Bond University in Australia - to name just a few. To this, we might mention the ongoing research of Dr. John Chia into enteroviral involvement in ME, the disciplined, longstanding work of Dr. Nancy Klimas in Miami, the Lights in Utah, Dr. A. Martin Lerner in MI, and Dr. Kenny de Meirleir in Belgium. And we do not want to forget the WPI, which will reconstitute itself and make important additional contributions. This list goes on, and apologies to those left off. It is an exciting time. A great consolidation is taking place. Does anyone get the idea that the press is trying to tell this story - to explain or sell this consolidation? In no instance are they "on this story".

And now comes the Rituximab study - seemingly from out of the blue. This is a major story in ME, perhaps the major story. The picture is best expressed by Dr. David Bell in this short youtube clip. Meanwhile, where are our "friends" in the press? Are we to accept and believe the lame excuse that mainstream journals do not cover small phase II trials? Are you kidding me? I would surmise that Dr. Bell would trade in all the "human interest" stories on ME for one decent accounting of the current research into this illness - especially regarding this Rituximab study.

Over the years there has been so little consolidated research in ME. One of the big hopes is that something will "slop over" from another drug study in another disease. This appears to be what has happened here - pure serendipity (combined with the observations of two very insightful cancer researchers). Perhaps we can expect more of this in the future? Let us hope so. In the meantime, this Fluge/Mella study, and many other items, convince us that certain scientists have fantastic minds for making unexpected connections.

We can all make up our excuses why this trial means nothing - it is "too early", it is "too small", the researchers are Norwegians, the drug is really dangerous, we don't know the mechanism, it is better to wait for more trials, how could ME be an autoimmune disease - the list of negative thinking goes on and on. It is worth mentioning again, at this point, Dr. Bell's startling statement: "I have not seen results like this in any medical study in the twenty-five years I have been in the field. These are extraordinary results".

Meanwhile Fluge and Mella move on to larger and more specific trials. A new trial will test Rituximab on four of the most severely ill ME patients. (If you need to be educated on this patient group, watch the powerful film "Voices from the Shadows".) These two Norwegian researchers have been backed by the Kavli foundation to find a blood test marker for ME. We can expect this research to continue and grow, most likely extending into Sweden. Several clinicians in the United States have their eye on trials with Rituximab.

The story of ME, in all its sordid reality, lies there at our feet, ready to be told. Who will tell it? What journalist has the courage to tell it? There is no longer any uncertainty. ME is a nasty and dangerous disease. The patients with ME and their caregivers have been abused for years. This study tells us that this serious disease may need a serious drug. ME is most likely viral in origin involving various immune abnormalities. It is very possibly communicable. This Rituximab study opens additional doors to research. The urgency is now. Too many patients have already gone down the tubes with astonishing neglect.

Even "the end of the story" is provided now (for journalists). They no longer have to speculate and fall back on their threadbare notions. Consider the amazing admission of the Norwegian Directorate of Health in the wake of the published study on Rituximab.

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

"Such a public apology from a governmental health agency has never occurred before."

How long do we, in the United States, have to wait for our story to be told, for our apology?

36 comments:

  1. Thank you so much for this post. I've been quite astonished at the lack of coverage this new study has received especially when compared with the XMRV is Dead pronouncements and the PACE propaganda.

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  2. I live in England and we are waiting too! I have suffered with ME for at least 20 years. Fortunately for me I am not chronic, If I get enough rest I can manage to live what looks like a normal life. What people don't see though is that I may be laughing and I maybe doing things but the effort behind it is tremendous. When they see me dancing to a band in a bar (which is something I only do now and again and bugger the concequences), they don't see me the week following when I'm flat out on the sofa and walking to the kitchen takes it out of me. Sufferers like me have a tough time because to the outside world we look well. I am fortunate that I have a wonderful and supportive husband who looks after me and supports me and a doctor who believes ME to be a real medical condition, after all, he was the one who diagnosed it after years of me back and forth to him feeling so ill and all my tests coming back fighting fit.

    After catching flu last Christmas I feel that I am just starting to recover, my doctor put me on Dosulepin which helped me sleep and reduced the inner inflamation, it took a while though, apparently a lot of people give up on it because it makes you feel very ill for the first month or so but I stuck it out and I am really glad I did :-D

    I have read many things about ME and follow research daily. I don't know what's right and what's misleading. What I do know is I have it, so does my sister, my daughter, my eldest son and my middle son suffers from Chroinic Uveitis which is inflammation of the retinas, that is mostly a secondary to an inflammatory condition but they can't find anything wrong with him. His consultant thinks it could be linked to the ME that is in the family. Next year the hospital my son is treated at is doing geneology research and we are being put in the programme. I'm really hoping it is of help.

    Voices from the Shadows is being shown in our city in December for medical people and the public to watch, we will be going along to that. It will be interesting to see how many medical people turn up!

    Thank you for this blog, I can't express how good it feels when you have people who believe ME is a cripling illness and know that us sufferers aren't pathetic whingers who can't be bothered with life....far from it. I love life and just want the chance to live it again to the full :-D

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  3. None of the crap as you call it should be ignored and mentioning it does not mean the study is nothing. We may turn around a year from now and many of the participants may be dead from this treatment. We need to know why patients relapse and if this is more disasterous long term. The study should be repeated with assays optimised to HGRVs, not the VP62 clone that cannot integrate. Instead of questions regarding how do you feel, it would be more appropriate to use one of the numerous markers for the disease.

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  4. I just don't know. I am for patiently waiting to see what comes out of this.

    I worry that the headlines will be "victory in CFS," "success," "cure found to mysterious virus," "the answer is here," and so on, without scientific data and sufficient studies.
    (I have seen some of the Norwegian press, which formulates this type of headline.)

    This happened with XMRV in 2009, and then, as someone put it, Judy Mikovits went from being a goddess to a victim of the Salem witch trials.

    There are a lot of questions: What patient population will this help? (There are statements that the drug helped younger people who'd had CFS for a relatively short time.) Will it help everyone? Or not? Does the drug have to be given constantly? What are the side effects? (I ask that because many of us with CFS, myself included, are extremely medication-sensitive, and have gone through the mill with bad reactions.)

    I think no matter what that the discovery of this drug helping some CFS sufferers will strengthen the argument that this disease has an organic, physical cause, and is not "in one's head," a disgusting phrase for those of us who want to be in the world, working, socializing and having fun! Yes, fun!

    What these two oncologists are doing will help to unravel this disease's mystery.

    And you are right -- why isn't the media publicizing the work going on by all of the scientists and researchers you mention above? I only knew about half of these studies, and those from the CFIDS Assn website, not from the mainstream press.

    I am heartened to see all of this research going on. Something's gotta give! This is a good period of time on the research end.

    I think we have to have patience while pressuring the media to cover the studies you mention above and make sure our voices are heard, those of CFIDS sufferers and their caregivers.

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  5. One omission in the list above is Dr. Anthony Komaroff, of Harvard Medical School, who tested people with CFS with spectral EEG's after exercise and sleep deprivation. Komaroff, who is a long-time CFS researcher, could tell the difference in the EEG's of people with or without CFS. Apparently, the brain matter looks different.

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  6. My apologies for coming back here, but I never remember everything I want to say. I am very glad to see this about Judy Mikovits, that she's still in the game, and that she went to Norway to find out about this drug.

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  7. I think you're reading too much into it. Firtly, it was Norwegian research and therefore less likely to be picked up immediately by US media. Also it was only a small trial with 15 participants in the treatment group. Normally such a trial would not get any significant publicity. XMRV was a story with a far wider public interest because it is an infectious virus that early reports suggested might be infecting many millions of Americans.

    Why always with the conspiracy theories? It's damaging to our image. Just be happy that after the disappointment of XMRV, progress is being made and this study will no doubt attract autoimmune researchers into the field.

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  8. @Kathy

    Dr Mikvotis already knew about Rituximab. She went to meet the two doctors.

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  9. Lombardi et al. detected HGRVs, not VP62/XMRV. Silverman gave the viruses the wrong name when he sequenced his VP62 plasmid contamination. The WPI/NCI samples have been proven free of VP62 plasmid contamination and the VP62 plasmid has never been in the WPI or NCI labs anyway.

    The viruses so far sequenced are polytropic, as are those found by Lo et al. They are nothing to do with VP62/XMRV, although some may have a xenotropic host range. We won't know until the viruses are fully sequenced.

    So it is incorrect to say XMRV is a disappointment, as they discovered HGRVs, not that XMRV.

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  10. What ever you think about HGRV, or other theories out there, the Retuximab study is so strong - ME is treatable with a cancer drug for Lymphoma and it is working on ME patients - it proves without a doubt that we suffer from a serious disease. It gives ME validation as a serious physiological disease, NOT pyscho-somatic, which means more research money from pharma will be pumped in and it will force health institutions to change their policies (I think this is the only way they will do that). It is incredible important that we are all ONE on this and move this research for Ritumixab to the for front - disease gets validated - and change policy of health institutions, and than ask the tough questions later.

    The movie shows a girl who completely recovered and this is amazing news. Click on the cc for subtitles http://www.youtube.com/watch?v=ZBCXKIRBQ-s

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  11. very nice piece..........you touched on all the important facts. Shame on all those journalists that only pretend to care about our well-being. It is hurtful-the stresses they cause- when their articles only report the negative nasty findings! Keep up the great work- we appreciate all you do for our patient population!

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  12. @Ed, it seems you have fallen victim to the belittling of our disease yourself.

    Just imagine if researchers anywhere in the world had treated 15 ALS patients and 2/3 of them had improved, some of them drastically - you bet the US press would pick that up in no time at all!

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  13. Anon, when Dr Yamamoto published research in 2009 showing that GcMAF had completely eradicated HIV from 20 patients, it received far less media attention than the discovery of XMRV in ME/CFS patients.

    I would never belittle our disease and do all I can to change attitudes, but it's important to stay objective and see things with perspective or nobody will take us seriously. Obviously that's not always easy to do when we are so personally invested and through no choice of our own ME/CFS has become our world.

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  14. This is obviously a very heart felt post and nothing can take away from that passion. This is not to downplay the significance of the Rituximab story to the ME/CFS community. It is important to this tiny fraction of society.

    However the author is clearly not a journalist and is quite unfamiliar with the mechanisms of professional journalism. As a result he clearly misinterprets it because it does not fit his own agenda.

    And casting aspersions on world class journalists is hardly helpful.

    Journalism is very much like science - it is a matter of vetting facts and following specific protocols.

    And the protocols are the same regardless of whether the journalist is covering the local school board meeting or science. They aren't altered to suit the whims and desires of readers.

    Next time you write about a topic where you have very little factual knowledge, please do your homework. Make an effort to educate yourself on the topic. You want journalists to do this, but you apparently don't want to set an example.

    You reap what you sow.

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  15. Anon @ 6:34

    "Journalism" and the media have little in common. It must be nice to live in a delusional world (ie college professor?) where journalists all live up to a high standard of truth and professionalism. As someone who worked in public affairs at a high level in government, I hold a very different perspective on "journalism" and the media.

    Glad to hear from the ivory tower, though.

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  16. Anonymous 6.34am
    ''Journalism is very much like science - it is a matter of vetting facts and following specific protocols.'' Sorry to say but I'm not sure what kind of world you have been living in. As far as I can tell there are very few journalists left. The media are around for sure, and their job is to keep the propaganda going for governmental institutions and big companies. I think that's the protocol you are talking about. Unless of course you are living in a delusional world, as anon 6.59am suggested, and oblivious to the obvious.

    'This tiny fraction of society'? Have you checked the estimated figures lately?

    Patrick

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  17. "It is important to this tiny fraction of society."

    Now that, is boiler-plate sock puppetry.

    As far as the UK is concerned, 250,000 patients, yes 250,000 who have been told to TALK themselves better, have now been shown to have an AUTO-IMMUNE disorder which responds to a drug treatment.

    This is not a small issue. 17 million worldwide, costing the developed world billions in health care, benefits and lost revenue, denigrated by health professionals as malingerers and psycho-somatisers, now proven (and to be frank, the evidence has been there much longer than this, if anyone chose to report it) to have a physical illness.

    How can this not be a huge story? In the middle of the summer they can run a video of a woman putting a cat in the bin and make it global.

    Or they can take a story about ME patient death threats, listing no convictions, names, or proof that genuine ME patients or advocates were involved in such activities, no comparison with levels of such behaviour and reported incidents correlative to other health advocacy issues, and build a month long campaign out of it.

    The truth about ME is a rolling snowball, there is scant time for the liars to adjust themselves into a place of honesty and begin to represent honest people who have been denigrated and abandoned in their darkest hour.

    If impact was the only issue, then there are a dozen frames for the ME story that make it globally important. Media storms have been fashioned on far far less substance than what we find ourselves neck deep in.

    Journalism is a Science? It's a dead Science, long since abandoned in favour of PR. If you don't play the PR game, you don't get press.

    Science is not truth. It can effortlessly become a secular scripture which can misappropriate moral authority to propagate lies. All Science involves humans, and no human operates free of agenda. Since most human beings cannot fully interpret the complexities of Science, it becomes an authoritative argument and not a logical one.

    Take your pseudo-religion elsewhere.

    -SJ

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  18. "Journalism is very much like science - it is a matter of vetting facts and following specific protocols."

    Disabled former journalist here. It's a matter of finding what bleeds ("if it bleeds, it leads") and pandering to your subscribers.

    As to how the Danish study has been covered, I'm not surprised a small study is getting little press, for now. I think a lot of editors are reluctant to repeat the events of 2009, as well they might. Let's be reasonable, despite the pandering, there is still some effort to get big, bleeding stories right. The jumped all over XMRV and it's proved trickier and less clear than was thought.

    And, as Ed said: "XMRV was a story with a far wider public interest because it is an infectious virus that early reports suggested might be infecting many millions of Americans." Autoimmune illnesses get less coverage, in general, because people feel they pose less of a threat.

    ME remains, for the most part, the stuff of human interest feature pieces and quiet coverage of scientific progress. (Someone in this thread said that a treatment for ALS would be treated differently. ALS is universally, horribly fatal and there was a major breakthrough this summer. How has it been covered? Quietly.) This is reality.

    We (I am an ME patient) need to keep the human interest feature pieces coming, building on increased interest generated by the viral connection, but we can't expect to get any more news coverage than any other chronic, unsexy, unpleasant unbleeding illness. Given the amount of ink we've gotten over the past few years, we can, sadly, expect extra caution.

    I very much appreciate this blog, and the blogosphere in general, where we can give the issue as much time and effort as we think it merits. That makes a big difference. We make a big difference.

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  19. Another omission in the list above is Dr. Byron Hyde. I know you can't include everybody but please don't forget him, or Dr Betty Dowsett. The time they have given to M.E and the clinical data they have collected over 25+ years is very important and shouldn't be overlooked if one can help it. They often are in blogs etc although please be aware I'm not criticizing, it's a very good and important blog.
    Amongst other findings,..."Myalgic Encephalomyelitis (M.E) is an acute onset diffuse inflammatory injury of the capillaries at the level of the basement membrane of the brain." ~ Dr Byron Hyde. His website is at www.nightingale.ca, and the website - www.hfme.org - is a wonderful resource. Obviously M.E patients will be familiar with both these, I'm just including the info for those who know little about M.E.

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  20. It was pointed out on the Phoenix Rising forum (http://phoenixrising.me/forums/showthread.php?14297-Astounding-Norwegian-research-breakthrough-with-Rituximab-can-solve-CFS-mystery!!!/page27 -- about halfway down) that an entirely different group of researchers suggested Rituximab as a treatment for CFS back in 2009: "Rituximab may serve as an effective therapeutic agent
    for ameliorating the symptoms of CFS". See this paper: http://www.ncf-net.org/pdf/AnticardiolipinAntibodies.pdf

    I don't know if this group has any connections to the two doctors in Norway but if not it is very interesting that they both arrived at the same conclusion independently.

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  21. This post upsets me for many reasons. 1) if you read the study it shows that not many people recovered or got better. The press release that touts the study has nothing to do with the actual study results. This group from Norway just has a good pr firm working for it. The study says it works only for a small subset. 2). I have been on this drug and it is EXTREMELY dangerous. Read the warnings. The drug worked for me for the first treatment, then quit working. I received two more treatments after that and during the third i almost died from a reaction and was only saved from the quick work of the nursing professionals. I also had a significant side effect that is with me to this day -chemofog--read about it. Not only is it the drug dangerous but it's very expensive maybe $10,000 or more a pop. So after three treatments I was worse off than I was before, devastated from the lack of results and increaseed disability, not to mention out all that money. 3) I have alerts set up for anything related to cfs that goes out on the Internet. I just counted and I received 50 alerts about this study. As I watched the alerts go by I became so upset because I don't want cfs patients to use this drug. So the idea that the media isn't covering it according to my alerts is just
    not accurate and 4) the idea that "the media" has it's own agenda, gives " the media" too much credit for having the sense to plan and have an agenda. They just ain't that savvy. I know because i've been a reporter at an International news agency for 20 years. Plus "the media" is so diverse it is impossible for their to be any coordinated effort or tomhave some sort of collective unconscience. So many newspapers and magazines have shut down and the newsroom reporters that are left are just trying to keep their heads above water. When people say "the media" I can only assume they mean tv news entertainment like fox news, which is little more than studio wrestling or morning shows. Back to the study, the drug only depletes B cells that is not a cure just a controlling of symptoms. If you read the stuthe most of the patients had a return of symptoms or it never worked for them at all. I hope and pray that cfs patients don't use rituximab. I promise they wil regret it. P.s. Did anyone notice in Michelle Cortez's most recent article, she quotes a drug official saying XMRV is real, just not transmitted through blood

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  22. This is a very good discussion, one of the best I've seen on this issue among the CFIDS and caregivers, family members and friends of those with CFIDS.

    A very good point above is that the breakthrough with this cancer drug that helps control CFIDS does bolster the argument that it is a physical disease, and that it should help change the way this illness is viewed -- and should open up more research and understanding among the medical and research community.

    I'd like to see the expressions on the faces of the naysayers and CFIDS-deniers, as I call them, when they are reading about the Norwegian studies and results. I'll refrain from further comments, but those who think daily exercise can help people with CFIDS, many of whom can barely walk through their residences, or go to the grocery store, will be forced to rethink the whole thing.

    It feels like something qualitively good is happening.

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  23. Sorry to disappoint but I don't live in an ivory tower, I'm most certainly not delusional, and I never mix religion and commentary.

    Once again, if you can't be bothered to learn much about the topic you are criticizing then you can hardly complain when others follow your example.

    As for painting all journalists (completely unrelated to the media whatever you believe that is) with the same brush then it must be true that all patients have a psychosomatic disorder and spend their time sending death threats to anyone they disagree with. After all if it is true of a few then by the reasoning given here it applies to all.

    There may be a reason patient advocacy doesn't gain traction if the opinions expressed here are an accurate reflection. How many people do you know who want to deal with strident, hostile, "we know more than scientists and journalists about how to do their job" attitudes and name calling.

    Surely this is not reflective of all patients. Perhaps they are afraid to speak up because they don't want to be insulted and called names.

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  24. The Norway study and others like should have been started years ago and would have been in any other illness bar CFS and ME


    http://www.ncf-net.org/pdf/AnticardiolipinAntibodies.pdf

    Anticardiolipin Antibodies in the Sera of Patients with Diagnosed Chronic
    Fatigue Syndrome

    Abstract:
    Examination of anticardiolipin antibodies (ACAs) in the sera of patients
    clinically diagnosed with chronic fatigue syndrome (CFS) using an enzyme-linked
    immunoassay procedure demonstrated the presence of immunoglobulin M isotypes in
    95% of CFS serum samples tested. The presence of immunoglobulin G and
    immunoglobulin A isotypes were also detected in a subset of the samples. Future
    studies will focus on elucidating whether alterations to mitochondrial inner
    membranes and/or metabolic functions play apossible role in the expression of
    ACAs.
    J. Clin. Lab. Anal. 23:210–212, 2009.

    "As a possible autoimmune disease, CFS patients may be treated by suppression of
    the ACA or by diminishing the antigen CL in serum. Previous studies have shown
    that treatment with monoclonal antibodies to B cells reduces ACA levels to
    normal in patients with autoimmune disease, leading to clinical improvements.
    Specifically, Rituximab, a chimeric monoclonal CD20 antibody, has been
    shown to normalize high ACA serum titers of patients with autoimmune systemic
    lupus erythematosus, rheumatoid arthritis, autoimmune thrombocytopenia, and
    autoimmune hemolytic anemia. Rituximab may serve as an effective therapeutic
    agent for ameliorating the symptoms of CFS (11,13). Therefore,
    classification of CFS as an autoimmune disorder may serve to increase the
    availability of treatment options for patients suffering from the disease."

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  25. In the UK, the media went into overdrive in July/August with exaggerated, inflammatory stories about ME patients making death threats to scientists, appearing in broadsheets every week for a month. At the centre of these stories was Professor Simon Wessely, lauded by the UK press as a respected 'expert' on ME. (Those of us who suffer from ME have a very different perception of Prof Wessely, of course.) Still, given his status (in the UK media's eyes), one would assume that these same journalist would be desperate to get Prof W's take on the Rituximab research, which is sure to lead to better understanding of the mechanism of ME, if not a cure for some sufferers. It is potentially lifechanging, yet not a peep from Simon Wessely. I wonder why! Well, I have a pretty good idea why.

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  26. Hi all,

    Like everyone else, I'm also disappointed by how little media attention these news have gotten in the "world press", but I thought I would tell you a little positive update about how the news have been received in Norway.

    TV2, one of the two most popular news channels in Norway, have had numerous stories about the research news, patient stories, and also covered the release of a new book about ME and ME patients, written by an incredible sympathetic journalist (http://debortgjemte.com/). The pressure created by the focus that TV2 has had on ME the past week has resulted in the Norwegian Directorate of Health publicly apologizing about the lack of understanding and treatment ME patients have gotten in Norway. They were basically forced to admit that they've been wrong all along!

    Even if Norway is just a small country, I hope this will spread to other countries once there is further study on ME as an autoimmune disease.

    It is almost impossible to believe for us to have gotten a possible cure, so much media coverage and on top of it all an apology from the Norwegian Directorate of Health!

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  27. The biggest story that the press has missed or ignored is the announcement in Science magazine that the clone that Silverman created and called XMRV (the VP62 clone) was contaminated with plasmid.

    Mikovits, Lo, Alter, and a few others did not use VP62 to search for human gamma retroviruses in ME/CFS, but the researchers who used VP62 (at least 16 papers) got invalid results. In other words, the negative papers that used Silverman's VP62 and could not find XMRV are invalid.

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  28. It is apparently getting quite a lot of coverage in Norway at least. I found this blog covering ME (written by a Norwegian journalist whose mother is ill) who also has a recent book published called "The Hidden": http://translate.google.com/translate?sl=no&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fdebortgjemte.com%2F&act=url

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  29. I have not come across a single Canadian media article on the Norwegian findings. The media are controlled by the government, especially when it comes to cfs/m.e. The neglect of many hundreds of thousands of ill is beyond corrupt. What a sick society we live in.

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  30. The study was amazingly well covered by TV2 in Norway - the largest commercial channel. They had a campaign going for a week with follow up reports and interwievs with health-leaders who were put on the spot. You could feel an immediate change in the general attitude towards ME (no longer called cfs etc. Just ME - keep this straight people) - and it was a powerful and emmotional time for many. The climate has changed, and the old men who now feel they have to defend their lifes work in psyciatrics and the Wessley approach, and the people promoting kognitive tricks and alternative wonders are desperate, and getting the public opinion against them. Because the evidence and scientific basis and papers on the nevrologic/immuniologic/autoimmun illness ME are overwhelming - people just has to be told about it.

    As you say, the media is neither lojal nor fair - but it is the most powerful tool we have - and it works wonders when used an utilizes properly. The journalist mostly have their quota to fill, and are looking for a story. Pitch them a health scandal with a spesific case, and they will probably want to write about it. If you have a friend or a acquaintance in the media, use it.

    I live only 1 km from Haukeland University hospital - where the study was done, and is continuing to study the long time effects/side effects. And it is a strange and frustration feeling to be so close to a building that with 67% probability contains a drug that can make me better from ME or well, and not be able to get to it.. But hopefully I will be a part of a clinical study around the summer. Fingers crossed

    The winds of change are upon us, and we must also do our part - in changing from the oppressed and defensive underdog with much bitterness, to offer our knowledge and proactive efforts, that has seemed so futile before. Now, its our time, and time for science, treatment and healing.

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  31. It is vital that they study severe sufferers.

    Will they send people out to collect tissues from bedridden people?

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  32. It is vital that they study severe sufferers.

    Will they include bedridden people?

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  33. Right now, as far as I know, they are doing a follow up study of the ones in the original study, to determine long time effects.Then they will start a clinical trial, when they are ready. All of the ones who got all well - after 4-8 months of treatment (long time, but when the improvement happende, I understand it happened fast) did have relapses and got sick again. But they got well again after follow up treatment. The question is if they can become cured after some time with follow up, that things will then normalise. At least it does seem like the improvement last longer and longer for each time.

    The fact that "only" 2/3 of the people in the study had improvement, is a bit discouraging, because they used strick ME criterias, Canada criterias, and with moderate to severe ME (not the ones in the dark rooms). But as we know, there are several triggers to ME, and it works in different degrees, possibly because of the individual differences in our immune system/genes etc. And of course the possibillity of sub-groups and so forth.

    There is a rumor that they will try to force the hospital (the nevrological department is filled with haters with psycosomatic views and papers and opinions they feel they need to defend) to admit the sickest patients, and give them treatment. But they are determined to take their time, and do a flawless study and work, which it has to be, to withstand the immense scrutiny that must and will come. They seem very competent the two, knowledgeble and balanced, they seem like a force to be recond with - dedicated to help the patients.

    More I do not know, besides that they are determined to see this through, and have received a grant that will enable them to start up labwork in an effort to find out more about the process, and ultimately a possible test for ME. That would be something.

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  34. Bravo to Drs. Malle and Fluge. They just may be so determined as to crack the CFIDS case that they stand up to all of the CFIDS-deniers.
    I still wish I had been a fly on the wall when Wessely et al read the articles on the Norwegian study -- that is unless they buried their heads in the sand and didn't read them.
    If the Norwegian doctors keep pushing and studying, they will gain much knowledge to help us and lay the foundation for other doctors, researchers and countries to deal with the scientific basis of this disease -- and then seriously with how to treat it.
    It's amazing to me at this point -- nearly 26 years with this illness -- that only Norway has gone this far as far as government acknowledgment of CFIDS or ME as they call it.
    What will it take here?
    Some people just testified at the CFSAG, including a woman who just retired from 30 years of government health policy employment and who now has CFS. They were pretty adament.
    Don't know what this will take to shake loose the proper attention, funding, research, etc.
    People are trying and so many objective tests are going on that something has to break through and surge ahead soon!
    Perhaps Drs. Malle and Fluge would travel here once they are finished and could influence the powers that be.

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  35. We will never get proper care for ME if it is combined with CFS, because it will keep flipping back and forth. There are no ICD codes for ME/CFS so does not officially exist as a diagnosis, just another made up term that can mean different things.

    ME/CFS is a trap. There will be good research. Then bad research. We will continue to write the same blogs and essays and wail about people not getting it. Nothing with ME/CFS will ever change. It is to maintain status quo. Officially. Which is what this Coalition 4 ME/CFS is promoting by making ME and CFS synonymous terms via ICD codes. ME will not exist as a diagnosis. It is the antithesis to what the ME-ICC and ESME have called for and is literally going backwards. ME/CFS is our ponzi scheme.

    ME patients should contact NCHS ASAP and voice objection to the Coalition 4 ME/CFS proposal. It is not necessary to enumerate all of the scientific objections, just as stakeholders. Deadline is Nov 18. Contact: NCHS , Donna Pickett

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