Friday, February 25, 2011

"Lost Voices" (from a hidden illness)

Last week the Patient Advocate officially joined the ranks of the X people - XMRV+ via serology.

I have a very fine urologist and I am this doctor's very first XMRV+ patient. I could hear the nurse's in the hall reading my chart, saying, "What's XMRV+?" This urologist, who will remain unnamed, is one of the most humane doctors that I have ever met. (I wish that this doc was my regular physician.) Last year I told this urologist about XMRV. At the time the doctor had a limited idea about this retrovirus. This year I took recently published XMRV/prostate studies and placed them in the doctor's hands. The doctor will read them. (At the moment progress in "XMRV" is made one person at a time.)

Each year I give this doctor a compressed version of my daughter's condition (The doctor has daughters too.). This doctor, who is deeply empathetic, listens and says, "I don't know how you can do what you are doing". In regards to viruses and illness he says, "Viruses are frightening". In reaction to my explanation about the current battles over research into XMRV and CFS, the doctor says, "We live in a world of self-interest and greed". The doctor makes sure to shake my hand on leaving. It is not surprising that I like this doctor. This doctor is one in a million.

Recently, out in the external world of ME/CFS, the old playbook from 1991-92 has been dug out from the back of the closet. It is not difficult to see what is going on. Big efforts are being made to shove CFS research back to 2005 and before - and to end serious research into viral or retroviral association with ME/CFS. There is a sea swell of garbage/argumentation, much of it illogical and nonsensical - and particularly aimed, directly or indirectly, at the WPI, who are seen as "independent". Working at Stanford, Dr. Montoya is more "insulated" and is going to be a little harder to get at - but attempts will certainly be made to knock him out too. With this in mind, Dr. Montoya keeps a pretty low profile.

Every tactic in the book is being used - on a revolving basis - to unseat "XMRV".

The big question is this: Has "XMRV" research reached "the tipping point" - where it has a momentum on its own? ("XMRV" is a term representing the dynamic effort to promote serious scientific investigation into viruses, retroviruses, immune dysregulation, immune profiles, and the mechanics of this illness.) There are two ways of looking at this. One is that since October 2009, XMRV has been stalled out, under fierce challenges, without reaching any resolution. The other is that XMRV, over that time period, under fierce challenges, has not been knocked out of the box. Ladies and gentlemen, place your bets!

One thing is certain. Dynamic research into ME/CFS is going to have to go ahead on its own. Means are going to have to be developed to privately finance research. (This is not the only disease with this problem.) No one is going to come to the rescue. The illusion that the government is going to help has been rolled up in a little ball and thrown in the cheap tin trash basket. Concerted, driven, focused research is the only way out of this illness. There is no other way - and now is the time to take advantage of the positive momentum. If the shitheads get the upper hand again, it will be another 5o years until another opportunity arises.

A few important researchers are sitting on the fence about the viral or retroviral association with this illness. Recently, in public, two researchers - Coffin, Alter - have expressed the need to find the center of this illness - XMRV or not. It has been suggested that these researchers have contact with a few patients - and have learned a bit about the specifics of this illness. But what do they really know? They know nothing. They certainly have no idea of the devastation that this illness can inflict on the human soul - and I am afraid that they are "beyond knowing". This ME/CFS disease needs empathy - but does it exist today ? (outside of my urologist and a few others like him)

Most people, doctors for instance, do not want to look at this illness in its particulars. They get bored and irritated with the endless list of symptoms, and the rotating, unhinged,"unable to be pinned down" nature of this illness. The face that is presents is too complex and too shifting for their tastes, and thus it invites disbelief - with the attendant cruelty unleashed towards the patients. This has a medieval feel to it.

Can one get beyond the disbelief factor with this illness? Is there a way to give a clear picture of the illness at its center, and of the patients at the bottom?

This is a very strange disease. Over the years, I have sought to find an image (for myself) that taps into the central aspects of the illness. For me, the disease comes straight out of poems and stories from Edgar Allen Poe's extreme and imaginative mind. CFS/ME is best characterized as an E.A.P.-related disease. No symptom is off the table, all symptoms rotate or evolve or worsen or change in an unpredictable fashion. The body - brain, heart, thyroid, gut - retreats into a posture of down-regulation - almost as if in hibernation, to avoid losing total control. All the senses are attacked in a flurry of confusing, seemingly disconnected symptoms. Everything becomes insensate - sight, sound, smell, taste, touch. No body organ is off limits to disequilibrium and disruption.

In 2009 I sat in a conference hall in London while Dr. Kenny de Meirleir flashed images up on the screen of severely ill ME patients in Norway. The photographs, videos or descriptions of these patients were truly frightening. (A young woman/girl spoke of having lived in the same house with her sister for the last four years, and of having never been able to see or talk to her sister.) The images seem to be out of the Middle Ages. The audience, doctors, researchers, patients and advocates, seemed to react in shock, as if somehow Dr. de Meirleir had done something inappropriate. Of course this is nonsense. But if those inflicted with this illness, or those treating this illness, cannot take a good look at the bottom, who can?

My essential point is that the picture of this illness, at its core, has not been presented very well. Perhaps, given the nature of the illness, this is impossible. Words, which are essentially rational, do not characterize it. Stories of particular patients, casually presented, fall short and invite disbelief. The essential nature of the illness, of the human "personness" seemingly being dismantled in an irrational fashion, frightens the onlooker. The fundamental character of this illness is chaotic.

Very few efforts have been made to portray ME at its core. A few videos have been made of patients "at the bottom". These are disturbing. Very few people have the skills and the sensitivity to "record" these patients - patients who cannot speak or cannot be touched or cannot hear, or cannot tolerate any stimuli at all. The very nature of the illness disallows getting close in a meaningful way. Few people have seen this, few people want to see this, few people try to articulate this state of "removal from life" itself. In the general give and take of the struggle for recognition of ME/CFS, these severely ill patients are forgotten, or left behind in their frozen silence, in their darkened room. They have no voice, doctors don't (or can't) see them, and consequently very few people - providers, doctors like de Meirlier (Are there doctors "like" de Meirleir?) - know and have seen their story. Obviously these patients do not show up at conferences or in doctor's offices. They do show up in Emergency rooms, where they are destroyed by the ignorant, crass doctors and nurses. In the meantime these patients are mute, and on their own - in the most primitive of medical circumstances.

A few individuals have made an attempt to engage this "removal from life" - to "take a look". The most successful is Natalie Boulton who compiled, edited and designed the book "Lost Voices, from a hidden illness" published in 2008 by InvestinME, (the second edition published in 2010). (I have written about this truly outstanding InvestinME organization here and elsewhere on my blog.) This frightening and uplifting book is everything you want to know and more. It has many personal stories and pictures of very ill ME patients in the UK. It includes a forward by Leonard Jason and responses by Vance Spence, John Chia, Jane Colby and Annette Whittemore.

These are the good guys. This book is a must read for those who can take it. A book like this will form the foundation for further investigations and revelations about the cruel nature of this illness. Look for more from this gal, Natalie Boulton - she is the best and she is a truth seeker. Doctors and researchers who are willing to engage ME/CFS should read this book. Maybe then they can sober up, and realize the true nature of this illness in its pure form.

"Lost Voices" can be ordered from Invest in ME here.


  1. There must be some logic to this illness,
    as there is always a fundamental basis to
    any process in Nature.

    Our challenge is to find it.

  2. While I am sorry to hear you are XMRV+ it sure does add weight to what Mikovits is finding in families. It will be interesting as more of our family members are able to get tested what truths will become evident about XMRV infection.

    I appreciated this blog. I lived for two years as you described totally at the bottom thinking surely I was dying as even breathing seemed too much. I couldn't go to the doctor or the emergency room as it was seemingly too much.

    It is three years later and I am still housebound mostly propped up in a bed but able to connect on the internet, lead a support group online, be an advocate online etc. I have trouble talking for very long but I can type and through the internet I am making sure my voice is heard and try to speak up for those I know who are in the place I was, the place of bare existance. People feel bad for me now in the limited life I can lead. I feel I am living a big life compared to when I thought I surely would not live many more days.

  3. Sorry to hear you're xmrv+... Thanks for the book recommendation.

  4. Do you have cancer? What does your uroligist do for you?

  5. "My essential point is that the picture of this illness, at its core, has not been presented very well. Perhaps, given the nature of the illness, this is impossible. Words, which are essentially rational, do not characterize it."

    I think you are right about this. When I was still healthy enough to be out in the world where others could see me, I didn't look sick. Now that I am so sick, I can't go out, I look very sick--but no one sees me. Trying to convey the reality of living--and slowly dying--of this illness is a real problem.

    Patricia Carter
    XMRV+, 24 years M.D.

  6. Patricia Carter
    XMRV+, 24 years M.E.

  7. I'm sorry you have tested positive. I hope you continue as one of the healthies with X. Thank you for your insights. I sure hope we have reached that tipping point. This situation is barbaric. If you have not seen the following and want another example of extreme ME in this society read Peggy Munson's mind boggling account:
    I used to think that if the signs of the illness were extreme enough that prejudice would give way to compassion. After reading this and also accounts of mistreatment of patients in UK hospitals, I no longer believe this. To be given the dx of "CFS" or ME is a very scary place to be.

  8. I'm sorry you tested positive. I'm also sorry we don't yet have a clear idea of what that means. And I agree that the community can't wait around for the government to step in.

  9. I would argue that the reason this illness seems so difficult to present is not because it's so different from other serious illnesses. It's because psychogenic explanations for it (the whole edifice of them) that have been built up for years and years has led to a collective 'splinter of ice in the heart' towards ME/CFS sufferers, not helped by juxtaposition of various stories of people with 'fatigue' (and often of the metaphorical kind) in the press.

    I don't think it's because people are scared of the 'human spirit or soul being crushed' - otherwise there are plenty of other illnesses as serious as neurological ME/CFS that this should happen to. It doesn't usually. That's presuming ME/CFS sufferers's spirits or souls are being crushed. Firstly I don't believe in souls or spirits in the religious sense (and others here may not either), but even people's 'spirit' in terms of who they are, their psychological integrity, are not being crushed or dismantled that successfully either. Look at the fight in people in ME advocacy for example! (My own daughter's fight is another story- spirit crushed? I don't think so!)

    I also agree with Erik's comment about finding the logic to this illness- it is there: psychogenic explanations have been clouding its view though.

  10. I wouldn't say there is no logic to this illness; it just hasn't been elucidated. A random forest algorithm of symptoms and lab test results would have yielded insightful results even before XMRV was discovered.

    Since October of 2009, whenever I'm confronted with a new symptom or problem I search Google or pubmed for that problem and tack HIV on to the end of the search. I'm stunned because I've found that the symptom in question is also seen in HIV patients almost every time. There are dozens of symptoms the two diseases (and HTLV-related disease) have in common. Suddenly it doesn't seem so illogical.

  11. Thank you for writing this post, and speaking so eloquently about the sickest of patients who are so often not seen or heard.

  12. I've noted for a long time that going to a doctor is like going to McDonald's - except you can't have it your way.

    If your disease or desired treatment isn't on the menu, tough shit.

    Doctors are one of few professionals you see who charge you for doing nothing. Honest professionals say "I can't help you" and don't charge.

    And if it is on the McMenu, you can be assured it will be allegedly palliative (pain relief) but not or more deadly than nothing.

    My Grandfather used to always say the only way to stay healthy was to stay away from doctors.

    Doctor's offices filled to overflowing is a damning revelation to their utter failure as professionals to do what they say they do - heal.

  13. "Good Day / Bad Day"!

    Why does this happen? What could cause this strange variation in illness exacerbation?

    There MUST be an answer.
    It almost seems to have a pattern.
    Something to do with the weather, perhaps?
    Dr Klimas seems to think the stress of Hurricane Andrew made her Florida patients worse.
    But was it stress? Or possibly something else? An environmental agent perhaps, unleashed by the violence of the Hurricane?
    We've all wondered about it, seemingly almost discernable, but as soon as you get close to the answer, everything falls apart and it makes no sense again.
    If only you could make out what it is, and master the logic underlying this phenomenon! Maybe, just maybe... it could be exploited to the maximum extent possible. Perhaps to stay at least as good as one feels on a "better" day.

    If only someone could just figure out what "Good Day/Bad Day" is, and tell others.
    Not that it would be a cure, but wouldn't it be something?

  14. For what it's worth, after 25 years of CFS, and with the recent study on proteins in our spinal fluid, I think that the triggering agent (EBV in my case) may not be as important as the disease process it starts. I have lesions in my brain and all of the cognitive problems of CFS. And if this study is correct and telling us that almost 800 unique-to-CFS "proteins" are in our spinal fluid, this may lead us to the disease process. It just makes sense to me that all of disparate symptoms could originate in the brain.

    However, it may be different with a retrovirus that remains active. I don't know about that. My understanding is that the XMRV tests are not accurate yet. My CFS doctor who worked with Dr. Montoya on the valcyte study told me when the WPI results came out that he thought it involved contamination because the lab they used had been a mouse lab before. So I'm taking a wait and see attitude about it until I hear about people with XMRV who get better on anti-retrovirals.

    The only thing that works for me is rest if I've overdone. And overdoing seems to be what causes my relapses. Gauging what is overdoing is the hard part as is accepting how little I can do. But I'm one of the lucky ones in that I can do some things sometimes. And when I can, that feels wonderful!

  15. Hi Chris,

    Superb blog as always.

    I am sorry to hear that you tested positive -- and glad that it helps you find out what happened to your daughter. Also, yes, we have to do this ourselves.

    I'd like to comment on the "irrational disease" idea. Are you referring to the disease itself?

    My view is different. I actually don't think the disease is biomedically special -- not more so than AIDS or MS or lupus.

    I think it's a serious ordinary disease that has been buried using serious denigration and confusion. People would understand it without the latter two things.

    In fact, I regard the "mysterious, special malady" meme as an artificial construct introduced by the denialists to further their interests.

    To me, the apparent irrationality is driven by denialists and the social psychology of denigration.

    To me, we need to be deeply wary of the idea that the disease -- as opposed to the politics -- is special.

    I have written on confusion. Will post it at some point.

  16. I agree with Since 1998 and Samuel Wales.

    The false idea that ME/CFS is "mysterious" and "complicated" is a part of the smokescreen and muddied water used to keep this disease misunderstood and Un-understandable, Un-researchable. The only mystery is which virus or viruses, and how do they do the damage they do. It has been seen as a viral disease since at least the Royal Free Hospital outbreak in 1955; Peterson and Cheney had brain scans of their patients in the mid-80s that resembled the scans of AIDS patients; in 1991 de Freitas found one virus and the CDC promptly had both the message and the messenger shot down. When WPI published in Science in 2009 Dr Bell said "It fits." Even Dr Klimas said, at one time, CFS is like AIDS-lite.

    All the viruses that have already been found in higher proportions in CFS have CNS consequences. Even though we've been told EBV is in everybody, I've recently looked into that virus, since I have titres that are "600 times normal" and I find that in the immunocompromised person, this is one very nasty bug, as are all the other herpes viruses that "we all have". In the immunocompromised person, these herpes viruses cause CNS dysfunction, rare cancers and many other problems. If the family of MLVs are the "enablers" of these resident/latent viruses, what's the mystery?

    To me, the only mystery that remains is how can those who continually obstruct the biomedical research live with themselves?

  17. Hate to have to disagree, but the malady was very mysterious. No one had any recollection of ever seeing anything like this.
    The testing bore this out.
    A peculiar CD4/CD8 ratio seen in no other illness. B cell function erased. High IL2. Low NK cell function. A combination of systolic AND diastolic dysfunction. Low red cell mass. A new virus.
    Platelet debris that exceeded all other illnesses except AIDS. Depleted RNase-L.
    AND, in a high percentage of patients, a rock bottom ZERO sed rate.

    It was weird all right. There was nothing in the CDC's literature that was even close.
    Although they didn't tell people about these things, "CFS" was a direct result of a mystery illness with mysterious abnormalities.

  18. Am saddened by your news, PA. Wouldn't wish this illness on anyone, least of all you.

    The government, aka the corporate state, is ruled by "self-interest and greed"; and that's not going to change anytime soon. I expect nothing from them.

    The WPI, however, is about helping sick people get well. They don't just say that's their mission; they ARE their mission. We must continue to support them.

  19. The government, aka puppets of the corporate state...

  20. Thank you for adding your voice to this... you articulate this illness so well.

    At my worst, in the "state of 'removal from life' ", that I was in I was indeed " left behind in.. frozen silence, in... [my] darkened room."

    "Very few people have the skills and the sensitivity to "record" these patients - patients who cannot speak or cannot be touched or cannot hear, or cannot tolerate any stimuli at all. The very nature of the illness disallows getting close in a meaningful way. "

    I am so grateful to the people who came to me and called me, trusting that I was in need and not hiding.

    15+year CFS/ME

  21. The best clues are in the extreme cases.

    Some real "Helluva clue" type clues.

  22. I'm sorry for you and your daughter.

    It all makes sense to me now in a certain way.
    My Dad died of prostate cancer and I got sick with M.E. four years ago right after learning he had terminal cancer.

    I got tested last December after my sister was diagnosed with breast cancer (there was no history of breast cancer in our family by the way) and I just got a positive result to XMRV.

    I feel that my life has ended before I even got the chance to get it started. My husband has been very supportive so far, but we wanted children, now it's over, everything's over.

    As for doctors, those criminals, not the rare ones who kept some human spirit as the one you describe, those who dismiss you by saying that they cannot do anything for you and tell you to see a psychologist even when they see that you suffer from recurrent infections and permanent fever, yes, I do have physical signs of this illness, still... I was quickly dismissed by these CRIMINALS.

    You're daughter's lucky to have you, to be her voice, the voice of the unheard.

    My thoughts go out to you and your daughter.