Sunday, March 6, 2011

Misdirection

Two ME/CFS articles (and more) were published in major American newspapers this weekend. The questions I ask are always the same. Why? - and why now? What are these journalists up to, and why are they so wide of the mark?

The first article in the New York Times was written by Mr. David Tuller. The article had a catchy little title, "Troubles of Chronic Fatigue start with defining it". In this article Mr. Tuller wrestles with the various historical difficulties of defining the patient population with this neuro-immune illness. In doing so he writes a long, convoluted treatise which effectively further confuses the reader. I defy any regular (average) reader to take anything useful away from this article.

The NY Times should encourage comments on these CFS articles. Various patients and advocates write terrifically articulate and reasoned comments. After all, they have "an attachment to the subject". My suggestion is that the NY Times should bypass Mr. Tuller and hire a few of these very sharp patients who write articulate and concise comments.

Mr. Tuller wrote what appeared to be quite a fine article on January 3, 2011. It looked promising that it had finally dawned on him (and his editor) that there was a journalistic story to be told. Optimist that I am, I thought that perhaps this would be the beginning of something different from the slop that they had been serving up for years. After all, many people read this newspaper. Instead Mr. Tuller has immediately lost the story line, and has veered off into the ditch. At best one could hope that his last two very weak articles are background filler to develop a more cogent storyline - but as of now, this remains only a hope. I am not holding my breath.

I asked myself what this article has to do with my situation and my daughter's? Nothing - it has nothing to do with either. This story is more about Mr. Tuller and his needs than any useful presentation concerning those suffering from this difficult illness. There are more forceful and honest ways to present the problem of characterizing this illness, starting with exposing the CDC's labeling this very serious neuro-immune illness as "Chronic Fatigue Syndrome". In a certain light this might be seen as a form of hate speech.

Over the years the various definitions of this neuro-immune illness have been constructed to disallow "neutrals" from being able to characterize or define the patient population with any consistency - thus interfering with any meaningful or exchangeable research results. This shell game has been going on for years. More recently, the Canadian consensus has narrowed and focussed the criteria to a meaningful set of symptoms that are sufficient and successful in identifying this patient population with great confidence. Yet, in spite of this, the confused and disingenous characterizations of this neuro- immune illness have been extended and sustained. Such is the effect of articles like Mr. Tuller's.

In reality, the problem of identifying ME/CFS neuro-immune patients is much simpler. I myself, a sculptor, can diagnose a ME/CFS patient in ten minutes with near 100% accuracy. Dr David Bell reiterates this idea that identification is not difficult, and he states that no other illness presents itself in this fashion. Why is this important piece of information buried underneath all this other crap in Mr. Tuller's article?

Repeat: NY Times should publish some of the better comments as the foundation of future articles. Not only will the articles be more legible, they will be much shorter. The Times could string together two or three of the best comments as the structural center of an article - and the general readership would benefit from having some clarity shown on the issue of disease definition - and other items.

Stirring this pot again is a dead-end, and it is unfathomable that Mr. Tuller would not know this. No - this is deliberate misdirection.

The second article, a full page and a half in the weekend section of the WSJ, was by Amy Marcus. Ms. Marcus has written a remarkable set of articles following this unfolding disease drama - the attachment of a retrovirus to this nasty illness. Here Ms. Marcus writes a human interest story that focusses on a real American hero, Dr. David Bell. Dr. Bell is a pediatrician who has dealt for years with a 1984 neuro-immune outbreak in Lyndonville, NY. It is a fascinating story, and Dr. Bell deserves every bit of attention that he gets for his great humane efforts on behalf of his patients and the rest of us.

And yet this recent article did little or nothing to advance the current, extremely important story line.

The big question is, why now? All of a sudden it is like 1991. What does this story have to do with the current crisis in research into this nasty and debilitating illness? Is this long article supposed to raise consciousness? If Ms. Marcus has a point, couldn't she be more forceful in presenting it? In this deadly "science" struggle currently going on, subtlety is not what is needed to advance the story line.

Interestingly, Ms. Marcus waits until the end of the article to say what she should have been said at the beginning - and which could have been the foundation stone of an important article. (In the first place 67% of current readership cannot make it to the end of any article.) At the end of her very long article, Dr. Bell states his greatest fear (and mine too):

"The picture (of deFreitas) reminds him of what happened in the past, when conflicting studies caused scientists to lose interest in the retrovirus. 'My greatest fear,' Dr. Bell says, 'is that people will throw up their hands and say they are not going to pursue it.'"

Some are happy with any journalistic coverage of CFS. I am not. I hate to say it, but I think we are going in circles. What I see is a recycling of past confusions and past stories.

What we need is some journalistic clarity - and a bit of courage. Is it necessary to tell these reporters what the story line actually is? Is it that difficult to decipher?

27 comments:

  1. I appreciate your efforts and hard work in the ME/CFS sphere, but on this occasion I'm not inclined to agree with your conclusions re these two pieces.

    I was very, very pleased to see them. I know we'd all like the journalists to tell the story better, but as neither have any personal involvement in the illness, I think it's remarkable they are showing such commitment, at a time when Governments are suggesting there's nothing here to talk about. They are swimming against the tide.

    I think if journalists take one side and furiously defend their position, they are open to a) their reputation being destroyed if they are "wrong", and b) accusations of a lack of neutrality. My view is good journalists try to understand all sides, and present a balance of views, and I see both doing that.

    I am glad they are both interested, researching, and writing. But I accept my perspective is different perhaps because I'm in the UK, and no journalists appear to be writing about XMRV at all, apart from regurgitating the occasional press release, without consideration.

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  2. This my dear sir, is why your readers rely on a sculptor for accurate reporting.

    Going to the high priests of propaganda and being "surprised" they continue to spout lies is delusional and/or wildly optimistic.

    They're re-framing the debate to minimize damage and/or kill the issue once more. Nothing to see here.

    The last bit of honest reporting in this country was in the late 1700's when it was heard "The British are coming!". Nothing honest, accurate and useful has been heard since.

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  3. I'm from Scotland and if articles like these featured in 2 of the biggest newspapers i'd be quite pleased. Instead we get 'churnalism' consisting of completely one-sided press releases on behalf of the psychiatrists who dominate here. If the Pace study was bad news, how it was reported here was tragic. Apparently exercising and choosing not to believe your symptoms are real are curative for ME! That surely must be what the average person now believes. A controversial study on a controversial illness but you'd never know from the media coverage. (i don't even want to get started on the Science Media Centre and Simon Wessley's involvement)

    Maybe these 2 articles won't move things forward for ME, your daughter or me (16 years ill) but they probably won't hurt either. Your anger/frustration is understandable but maybe misdirected in this instance.

    Best Regards

    Neal

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  4. Your post woke me up, PA. I guess I found myself happy with crumbs that any coverage that didn't break down or disgrace ME/CFS sufferers seemed to satisfy me when it shouldn't.

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  5. I really fealt good about these two articles.

    I think exposing the truth of the past is not such as much as a circle as it is a path to exposing the truth.

    Keith

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  6. PA, you're right again. I thought the same when I read the two articles. It seems that everyone is preparing for a withdrawal. At least, this time, we have the WPI. Judy has more than Eleaine had twenty years ago.

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  7. My thoughts were precisely the same as the PA's and I was surprised that no one else voiced these concerns.

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  8. For some reason CFS patients seem to think that AIDS advocates will befriend us, since we are both infected with a retrovirus and have been marginalized. What people don't seem to understand is that XMRV will take $$$ away from AIDS funding, a mostly preventable disease. AIDS advocates won't like that. David Tuller is an AIDS activist. I'm just saying: consider the source.

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  9. If this patient population keeps ranting and raving; there will be no forward progress.

    Words and the tip of a pen are marvelous.

    Yet the time has arrived to get involved in political action. To sit around and bash journalists isn't fun to do or see. In fact, I believe it piuts one on par with what they are objecting to. In essence, the circle of words...

    If you disagree with their article,n either do not read it and forget it. Or, write them about your concern.

    If you want to create change, take a step forward and get political.

    AIDS patients have HHV-6 as well as XMRV too. WE are not going to take away funding from AIDS. We are going to take all of the funding away from the psychosomatic groups, porganizations and programs which are getting what the biological side of this disease warrants. The amount? Billions.

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  10. "AIDS advocates won't like that." Yup. At CROI a few days ago, Jeanne Bergman of aidstruth maliciously attacked XMRV+ patients taking antiretrovirals (aidstruth is a pharma-funded attack org.) She got a lot of laughs.

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  11. I always appreciate your perspective, Patient Advocate, and this is no exception. My viewpoint about these articles is different though. I thoroughly appreciate Amy Dockser Marcus and David Tuller writing about M.E. Although what they have written is not new to you and me, it is new to most of the public who might read it. Although it would be great to see mainstream journalists writing articles similar to Dr. Jamie Deckoff-Jones' latest blog article on X Rx, that might be expecting too much now. The time may come when good journalists such as Dockser and Tuller might well write that way, and I hope it will be soon. Still, I appreciate what they are doing right now.

    Patricia Carter

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  12. I agree with many here.
    Now we've had a couple of actually reasonable articles in major press. These people have actually taken interest in the issue. We should encourage them, not rip them apart.

    Why? Because it is stupid. I know the amount of frustration and the long history of abuse ME/CFS patients have endured. But to expect immidiate perfection is folly.
    Like it or not, we need all the sympathy we can get.
    We can't get cocky at the first opportunity.
    Be cool dammit!

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  13. Hi PA,
    While I agree with your points, that we need MORE, I was thrilled to see these articles lay some important groundwork for the misinformed public.

    We need to build off this momentum and take the opportunity to do more.

    I love your blog and I hope to see you again at the next CFSAC.

    Best Wishes,
    Karen Ravitz
    www.mcwpa.org

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  14. Hi Chris,

    I truly understand your heart and passion and ability to see this is only scratching the surface. But to the average reader they have a lot to catch up to even understand any of this. There is still much education to be done.

    The fact that David and Amy are embracing this is nothing short of miraculous. I think through time Amy knows she has a captive and well received audience and following. And she writes with confidence that only someone who knows they are close can do. She also knows what will not only sell, but reach the reader of the WSJ and we have to somewhere trust her. Giving people "too much" is sometimes not in our best interests.

    With David I think he is newer to our community and subject matter. And to even raise the conversation about the diagnostic inconsistencies is a monumental step. Maybe he wanted to leave the reader confused. As we, and doctors and pretty much everyone is on the subject. It's a mess and he knows it. But just to champion that subject is huge.

    So I would give him time. He is a lot less accessible to comments and feedback than Amy. Amy's email has been circulating around for a long time now. She knows her market very well. But David is new. His email is also not as public. But if you would like it, I would be glad to send it to you. I feel a letter and intro from you would be absolutely excellent.

    I would also love if YOU could write an article for any of these high profile magazines or publications. Deep, penetrating and real - just as you always write. You could also usually get a writers' fee. Typically you send a Query letter to the publication and then they either accept or reject. It never hurts to try. But I think all of us here and in the community would like nothing more than a hard hitting article written by you.

    Thank you Chris for all your insights, commitment and immense respect and creativity through words on behalf of all of us.

    Love, Sita

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  15. I believe it is not a coincidence that these 3 pieces appeared in major papers. Something grand will happen.

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  16. Erik Johnson - Raggedy Ann Disease survivorMarch 7, 2011 at 6:02 PM

    I must have looked a bit stunned when Dr Cheney told me the CDC's new name for the Raggedy Ann Disease, for he immediately said. "It's just a provisional name while they figure out what this is. I don't expect it to last more than a month or two, now that they are finally looking into it"

    See? No worries. CFS is just a provisional term. No doubt they have every intention of giving the Raggedy Ann Disease a proper name... just as soon as they get around to looking into it.
    Hah. "Two months" Can you believe it?
    Couldn't make up stuff like this if I tried.

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  17. I, too, was disappointed in Tuller's article. It was like macaroni from a box when you're expecting gourmet. Knowing the isolation and pain of being a minority himself, I'd like to think Tuller had an off day. Let's hope he hasn't been influenced by "special interests".

    David Bell is one of those incredible people that makes my tail wag as soon as I hear any news of him. Would I have liked more from him and/or Amy regarding the government's skepticism and lack of bold action regarding XMRV - of course. But there's one thing I will never question - Bell's integrity.

    As far as the CDC's response to XMRV, there is an author that helps explain the government's behavior. His name is Chris Hedges. His book, "Death of the Liberal Class". If you're feeling up to it Google - Chris Hedges December 2010 Book TV Portland, Oregon - and watch a remarkable video. If you're not feeling well, please don't. It can be overwhelming.

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  18. Rendere:
    I take macaroni over starvation at any time.
    Give them som time to learn to cook.

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  19. I usually always agree with you PA however this time I have a different view. I thought the NYT article by Mr Tuller was excellent and hope he continues with this type of article. I also think Ms Dockser Marcus has been terrific and the WSJ is the only paper providing regular news on ME/CFS/XMRV.

    THANK YOU MR TULLER (NYT) AND MS DOCKSER MARCUS (WSJ) AND WE LOOK FORWARD TO MORE ARTICLES LIKE THIS!!

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  20. Forgive me for being impatient, but I don't have much patience left. I've had ME/CFS for 27 years and, like many, am losing ground. It may be too late for me, but the battle is much bigger than self now.

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  21. I have followed this blog for some time and find it a very helpful source of information. It’s an example of how multiple people can benefit from the love and loyalty of one person (you) for another (your daughter).

    I find the two newspaper articles you link to in this post informative and a good read. Fibromyalgia seems to receive more attention in Australia’s general media than ME/CFS, (possibly because Fibromyalgia is supported by Arthritis Associations here). Would that articles of this calibre about ME/CFS appeared in our main newspapers, especially in the widely read weekend sections. I think articles that provide accurate but not-too-technical information to the general public are highly beneficial to our cause. I don’t think either article is by any means run-of-the-mill.
    A bit of nitpicking re WSJ article and video:
    When I read in Amy’s article that Ginger Burg “is still severely affected by chronic fatigue syndrome” and then discovered in the video that Ginger married and raised 6 children I understand how a person who has no personal experience of ME/CFS concludes that ME/CFS isn’t a big deal. In the video I heard the information that Ginger “had to spend most days lying down to avoid spells of dizziness”, but I still struggle to reconcile a description of “severely ill” (since age 14) with “raised 6 children”. What description is left for those who are less functional than Ginger? “Near-death” or “critically ill” describes the very worst cases but if those terms are applied too loosely then something else is needed for those who literally are critically ill and near death. Would something like “still experiences significant functional impairment” be better?

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  22. Continuing from last comment .....
    Disclosure of interest:
    That ME/CFS needs to be better defined is one of my hobbyhorses.

    I think research into ME/CFS will continue to flounder until more distinct patient cohorts are studied. The apples and peaches comparison in NYT article is appropriate.
    It seems to be human nature to assume everyone with similar symptoms ails in the same way as oneself. That’s why we’re all fed up with how readily people inform us they, or someone they know, recovered from ME/CFS via yoga, meditation, chiropractic treatment blah, blah, blah ….. and if we do the same thing we too will recover.
    After his experience with fatigue from cardiomyopathy Dr Cheney seemed to change his opinion about possible cause of ME/CFS to conclude the fatigue was related to compromised heart function.
    Many patients seem to have the same bias. They assume that their experience of ME/CFS is the norm. Perhaps it is. Perhaps the vast majority of people with ME/CFS have very similar symptoms and there are just a few outliers.
    Or, do we tolerate a waste-basket diagnosis? Do we all have the same disorder? I don’t know the answer, but I think we should keep the question alive.
    I avoid ME/CFS support forums because of the vitriol and intolerance for diversity of opinion and experience on those forums. I wonder whether I have been misdiagnosed (or diagnosed for convenience to avoid further investigation). Perhaps I have an atypical form of ME/CFS. Or do I feel atypical because the people who think they are there for everyone with ME/CFS intimidate me, and others like me, into silence?
    Maybe I have a less complicated form of CFS. Perhaps many people have two overlapping conditions, a chronic infection or immune disorder and a condition that produces fatigue. Perhaps studying me, and others like me, would be helpful because I am free of the complication of a second condition. (I avoid participating in studies because I am concerned that I might ‘contaminate’ the study if I don’t really have CFS.) In her article Amy writes, “A recent study by the CDC found that childhood trauma can be a risk factor”. It is prolonged and extreme trauma in childhood that triggered my fatigue but my immune system seems to have withstood the trauma.

    A link to the article “Cancer Research Before Activism, Billionaire Conservative Donor Says” appeared at the bottom of NYT webpage when I accessed David Tuller’s article, http://www.nytimes.com/2011/03/05/us/05koch.html?pagewanted=1&src=un&feedurl=http://json8.nytimes.com/pages/health/research/index.jsonp
    The billionaire is David Koch. In 1992 he was diagnosed with prostate cancer. Currently one of Mr Koch’s main philanthropic causes (cancer research) is somewhat aligned with ME/CFS (via XMRV).
    Mr Koch probably is unfamiliar with ME/CFS. If he reads reports about recovery from ME/CFS using GET, LP, CBT, a change of diet, yoga, avoidance of excessive exercise (in overtrained athletes), … the list goes on, he could be forgiven for concluding that ME/CFS isn’t a dreadful, often intractable, and in some cases possibly contagious condition. The stories he probably would encounter in the general media in Australia are about sports people or celebrities who “battle” with and “triumph” over CFS.
    Far better he encounters stories like David’s and Amy’s.
    Sometimes my heart breaks for you PA because I think it might be harder to watch someone who you cherish so dearly languish, and be unable to change the situation much, than it is to be the one languishing (hard as that is).

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  23. I agree with your assessment, Chris. I saw these articles as "filler" at best, at worst lacking in courage and possibly CYA, just in case all the smoke being generated by the denialists secures the battlefield. At best, it was jogging in place.

    The point that Tuller is from an AIDS background is very pertinent. One could also say that Coffin and buddies and much of NIH and NCI are also feeding at the HIV trough when it comes to research money, which is bound to shrink in direct proportion to Republican "values" when it comes to budget cuts. One of the NCI speakers on Rancaniello's podcast recently said his concern was that research money would be "wasted" on viral/retroviral research for ME/CFS.

    Compare the 2011 NIH HIV/AIDS research budget to that for "CFS":
    CFS: $5 million
    HIV/AIDS: $3,184 million ($3.2 BILLION)
    HIV vaccination: $603 million
    Vaccinations, other: $1,690 million
    Tuberculosis: $199 million; TB vax: $16 million
    Malaria: (no US cases except for travelers returning from tropical countries): $116 million; vax: $36 million

    The money pipeline for these areas is already established and flowing. The "in" crowd is already helping itself and its members to get their piece(s) of the pie. (Voting on who gets grants, etc.) Why would any of them want to try for a small piece of such a small pie? Why would they be so brave and bold as to research a retrovirus characterized as a Murine Leukemia Virus, when their preferred lab animal is...mice?

    We are, indeed, right about where we were in 1991 and going in circles. The teams are a little better balanced this time. Dr Judy has better support and comes from the same background as her detractors, unlike deFreitas. (Some)Patients and those who care about them now have communications networks and are more sophisticated when it comes to those who claim they want to "help" but really want to maintain the status quo so they can continue making a good living off the suffering of patients.

    Corporations invented the technique of giving $1 to one party and then $3 to the other party, then saying "See, we give to both parties". The astute notice that the end result is a net donation of $2 to the party that favors corporations and a net of $0 to the other party. The CAA and your friend CJ do the same thing: they say or write one positive thing about WPI/Mikovits/MLV research, then they say/write 3 or 4 negative things, or miss the opportunity to hit the denialists hard by coming out with porridge-like statements. They constantly "throw the game". The net result is negative, but they will always point to the one positive to distract from the overwhelming negatives they've put out there.

    I sincerely hope that Tuller and Marcus are not beginning that "Waffler's Waltz" - one step forward, two steps back.

    There are any number of "meaty" stories that could be researched in this disease. I wish someone would investigate Unum and MetLife and how they influence public policy, especially on "CFS" and other diseases without "objective" evidence.

    How the CDC's "Viral and Infectious Diseases Branch" spent all "CFS" research money trying to prove it a psychomatic illness, when they had hundreds of clues that it is viral or retroviral, would be worth a Pulitzer prize in itself. What's the process whereby people with educations in medicine, biology, virology, epidemiology and infectious diseases (like Fauci, Straus, Reeves, Suzanne Vernon, Beth Unger) use federal research money designated for viral and infectious disease research, go completely off on a tangent that is beneficial only to disability insurance companies, Medicare, and psychiatrists? There's a story there; why aren't they interested?

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  24. This was posted by Jayne but seems to have disappeared:

    Jayne has left a new comment on your post "Misdirection":

    I have followed this blog for some time and find it a very helpful source of information. It’s an example of how multiple people can benefit from the love and loyalty of one person (you) for another (your daughter).

    I find the two newspaper articles you link to in this post informative and a good read. Fibromyalgia seems to receive more attention in Australia’s general media than ME/CFS, (possibly because Fibromyalgia is supported by Arthritis Associations here). Would that articles of this calibre about ME/CFS appeared in our main newspapers, especially in the widely read weekend sections. I think articles that provide accurate but not-too-technical information to the general public are highly beneficial to our cause. I don’t think either article is by any means run-of-the-mill.
    A bit of nitpicking re WSJ article and video:
    When I read in Amy’s article that Ginger Burg “is still severely affected by chronic fatigue syndrome” and then discovered in the video that Ginger married and raised 6 children I understand how a person who has no personal experience of ME/CFS concludes that ME/CFS isn’t a big deal. In the video I heard the information that Ginger “had to spend most days lying down to avoid spells of dizziness”, but I still struggle to reconcile a description of “severely ill” (since age 14) with “raised 6 children”. What description is left for those who are less functional than Ginger? “Near-death” or “critically ill” describes the very worst cases but if those terms are applied too loosely then something else is needed for those who literally are critically ill and near death. Would something like “still experiences significant functional impairment” be better?

    ReplyDelete
  25. Here is another comment by Jayne. Sometimes people take off their comments. I see no indication of this. I myself do not edit the comments on my blog.


    Continuing from last comment .....
    Disclosure of interest:
    That ME/CFS needs to be better defined is one of my hobbyhorses.

    I think research into ME/CFS will continue to flounder until more distinct patient cohorts are studied. The apples and peaches comparison in NYT article is appropriate.
    It seems to be human nature to assume everyone with similar symptoms ails in the same way as oneself. That’s why we’re all fed up with how readily people inform us they, or someone they know, recovered from ME/CFS via yoga, meditation, chiropractic treatment blah, blah, blah ….. and if we do the same thing we too will recover.
    After his experience with fatigue from cardiomyopathy Dr Cheney seemed to change his opinion about possible cause of ME/CFS to conclude the fatigue was related to compromised heart function.
    Many patients seem to have the same bias. They assume that their experience of ME/CFS is the norm. Perhaps it is. Perhaps the vast majority of people with ME/CFS have very similar symptoms and there are just a few outliers.
    Or, do we tolerate a waste-basket diagnosis? Do we all have the same disorder? I don’t know the answer, but I think we should keep the question alive.
    I avoid ME/CFS support forums because of the vitriol and intolerance for diversity of opinion and experience on those forums. I wonder whether I have been misdiagnosed (or diagnosed for convenience to avoid further investigation). Perhaps I have an atypical form of ME/CFS. Or do I feel atypical because the people who think they are there for everyone with ME/CFS intimidate me, and others like me, into silence?
    Maybe I have a less complicated form of CFS. Perhaps many people have two overlapping conditions, a chronic infection or immune disorder and a condition that produces fatigue. Perhaps studying me, and others like me, would be helpful because I am free of the complication of a second condition. (I avoid participating in studies because I am concerned that I might ‘contaminate’ the study if I don’t really have CFS.) In her article Amy writes, “A recent study by the CDC found that childhood trauma can be a risk factor”. It is prolonged and extreme trauma in childhood that triggered my fatigue but my immune system seems to have withstood the trauma.

    A link to the article “Cancer Research Before Activism, Billionaire Conservative Donor Says” appeared at the bottom of NYT webpage when I accessed David Tuller’s article, http://www.nytimes.com/2011/03/05/us/05koch.html?pagewanted=1&src=un&feedurl=http://json8.nytimes.com/pages/health/research/index.jsonp
    The billionaire is David Koch. In 1992 he was diagnosed with prostate cancer. Currently one of Mr Koch’s main philanthropic causes (cancer research) is somewhat aligned with ME/CFS (via XMRV).
    Mr Koch probably is unfamiliar with ME/CFS. If he reads reports about recovery from ME/CFS using GET, LP, CBT, a change of diet, yoga, avoidance of excessive exercise (in overtrained athletes), … the list goes on, he could be forgiven for concluding that ME/CFS isn’t a dreadful, often intractable, and in some cases possibly contagious condition. The stories he probably would encounter in the general media in Australia are about sports people or celebrities who “battle” with and “triumph” over CFS.
    Far better he encounters stories like David’s and Amy’s.
    Sometimes my heart breaks for you PA because I think it might be harder to watch someone who you cherish so dearly languish, and be unable to change the situation much, than it is to be the one languishing (hard as that is).

    ReplyDelete
  26. I think I stand somewhere in the middle here.

    I want more, and better, from journalists, too. I think all the articles could have said more, done more, exposed more - and God do I want to see that happen sometime soon. I understand your feelings about it because I have that same frustration and impatience - not just for yourself but also for a loved one who's sick (if I read that right about your daughter?) - it's hard and frustrating and quite frankly a tragic situation!

    But I'm also really relieved to see some positive press out there, esp at a time when publishing what they have, they're already going against a VERY strong tide of negative articles.

    I'm in the UK, and as others have said ... maybe that affects how I see this, because every single article ever published here, pretty much, just slates ME patients, and it's affecting everything so badly. I've lost so many friends, taken so much flack, and had such poor healthcare, that yep, I'd take just crumbs right now. I only wish the UK networks would have even ONE journalist and ONE paper willing or able to report anything different to the rest!

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  27. Contemplating the economics of mice:

    As oerganix mentioned, they're in every lab. They're cheap to buy, to maintain, and are used in Phase I drug trials. It would conceivably cost big bucks to replace them and the equipment used with a more costly lab animal. Then there are the costs of cleaning up XMRV contamination. Additional costs? And what about the cost of all those CFS, Autism, etc. lawsuits? No problem, Tort Reform is a done deal thanks to corporations. Taxpayers will foot the bill.

    ReplyDelete