Tuesday, November 30, 2010

The relationship of XMRV to CFS and M.E.

I know that the “hot” topic of the moment is whether XMRV or the gamma retroviruses in general can be transmitted by way of blood donation, but I would like to back off for a minute and survey the problem.

I happened to be watching “And the Band Played On” last night, and I noticed that they were looking at material from lymph nodes, not from blood draws, when they discovered HIV. That’s very interesting for those of us who suffer from M.E. (given the hopelessly dismissive name “chronic fatigue syndrome” by the U.S. CDC in 1988), because, at least for those of us in the U.S., tender lymph nodes are a major characteristic of the disease. Dr. David Bell once pointed out that patients with this disease can point to lymph nodes other people don’t even know they have.

Why are we not looking at lymph nodes instead of just blood serum?

It seems to me that the primary issue is whether or not up to a million Americans, sick with a disease that has been given a stupid name and garbage diagnosis by the CDC, actually are carrying a retrovirus or family of retroviruses. CDC has been “studying” this disease for 25 years, yet freely admits that 85% of patients – at least 850,000 people – have the disease but no diagnosis.

Research in France suggested that the disease pools in the lungs of patients – boy would THAT be bad news! Why are we not looking for it in sputum, then?

Understand that a retrovirus – ANY retrovirus – is going to be transmissible through blood and body tissue because it becomes part of your DNA, and eventually finds its way all over your body. A better question, perhaps, is whether the mechanisms that have been used to keep from transmitting HIV and HTLV will work with a different family of viruses, the gamma retroviruses, where XMRV fits.

We do not know much about how gamma retroviruses in humans. XMRV was the first one found, almost five years ago, in patients with a particularly virulent form of prostate cancer). However, there is a lot of research into gamma retrovirus behavior in the animal world. So that part of it should not be that difficult.

In contrast, finding consistent and homogeneous data sets of patients with M.E. among those diagnosed with CFS the way recommended by CDC (by first starting with people who are fatigued, and then eliminating any possible physical cause), cannot be done without acknowledge the failure of the CDC approach.

Now I come to Exhibit A – me, moi-meme, I.

I was in the Lombardi et al study in “Science” (October 9, 2009), and I was positive for XMRV. Hmm, I thought, that’s interesting.

Interesting but not, for me, earth-shattering, because I already had plenty of abnormal test results and viruses! I have been the patient of two excellent specialists on this disease – Dr. Marsha Wallace of Washington, DC (who no longer practices), and Dr. Dan Peterson of Incline Village, NV, who has been treating patients with this disease and participating in research studies about it, since a major cluster outbreak occurred in the Tahoe-Truckee area, or North Lake Tahoe, where Incline Village is situated, in 1984-85. They knew I had what the cluster outbreak patients had, and every biomarker, every chronically activated virus, was another step in understanding what has caused these outbreaks.

I personally believe I was caught up in an outbreak centered on Cherry Hill, NJ, an area that contributed a large share of the students at Villanova University outside Philadelphia, where there was an outbreak of Epstein-Barr in 1990 that swept up not only students, but faculty as well, including two other members of my department besides me. My full collapse did not occur until later; I have often wondered if the information that was censored or dismissed in the late 1980s and early 1990s might have spared my transition into the hellish state of progressive M.E. on October 24, 1994.

More to the point, however, is that if anybody has what the CDC calls CFS, I do. (For the record, I do not have what the British psychiatrists call "CFS.") Let’s go back over some of what I test positive for besides CFS, shall we? (This is testing done most recently in 2008 and 2009, when I was in relapse off the experimental immune modulator Ampligen. I have been back on Ampligen for ten months, and many of these tests have better results now.)

1. Immune biomarkers: 37kDa Rnase-L, a natural killer cell function of 3%, and abnormal cytokine counts.

2. Active viruses (some even active in my spinal fluid): recurring EBV (comes and goes – the rest are active all the time off medication); HHV-6 Variant A; HHV-7; cytomegalovirus; and three strains of Coxsackie B.

3. Abnormal SPECT scan and very abnormal VO2 MAX scores.

4. Abnormal Holter Monitor test and abnormal 24-hour BP/pulse test; diagnosed NMH/POTS

5. Hashimoto’s thyroiditis; hypothyroidism apparently caused by an inability to convert T4 to T3 (I take supplemental thyroid medication to keep my T7 panel normal).

6. Major symptoms: Severe pain behind my eyes and in the back of my neck 24/7, plus frequently occurring severe headaches. Photophobia, sensitivity to loud noises, tinnitus, parathesias, severe muscle weakness (to the point of collapsing to the floor), ataxia, blackouts, expressive dysphasia, central auditory processing (CAP) difficulties, dyslexia, dysgraphia, loss of volition (what I would call "the pause," as if someone had punched the pause button on my control panel), and profound confusion.

7. Other diagnosed related symptoms: inexplicable difficulty falling and staying asleep, myofascial pain syndrome, dropped left foot (that clears up on medication – I have no idea why), inability to pass a Romberg test.

See? XMRV was, well, okay, something new. And I find the research on both XMRV and the gammaretroviruses convincing, but then, I am not a scientist (although I can read statistics – and know how to put together a data set and how to evaluate one put together by someone else).

It is extremely important that while the light is shining on retroviruses, we not forget these other problems represented in one case – me – and that I share these viruses and biomarkers with a large number of my fellow patients (those who have had the money to get the tests, because by and large you have to pay cash for them, as I also have to pay cash for the treatment – the CDC is doing a tremendous job for the insurance industry). I have friends with infections I don’t have as yet – parvovirus, Lyme, mycoplasma, clamydia pneumonae. That we know of. And I have some things my friends don’t have.

We also have lost people to myocarditis (infection of the heart muscle), rare cancers such as stem cell cancer, and sometimes, just too many things wrong at the same time.

By and large this is a disease of immune defects, multiple infectious assaults, and resulting damage to the neurological, endocrine, cardiac, and biomechanic mechanisms.

The disease bears a resemblance to MS not only in symptoms, but also in having different flavors. I know patients who were sick in late adolescence, recovered completely, then relapsed again in their late 30s or 40s. I know patients who thought they had recovered until they started training for a marathon (one was a navy SEAL), which then threw them into a total bedridden state. I know patients who got very sick, got a bit better, and plateaued – have remained at that level, not well but not as sick as they originally were.

And then there are the people that call themselves “25-percenters” in the UK, because the best guesstimate would be that 25% of patients with M.E. have this disease in a progressive form that just keeps getting worse, and worse, and worse, leading eventually to a premature death. I believe I was a 25-percenter myself, saved from a lifetime in a one-person horror show by access to Ampligen. (I do not mean this to be an advertisement for Ampligen; I happen to respond unusually well to the drug. However, that should say something about both the drug and the patient, should it not?)

I have gone off Ampligen twice – the first time, after being on it 20 months and paying roughly $40,000 for the privilege (my parents helped my husband out with other bills), I thought I was cured. I had a wonderful year, which some of us call the “Ampligen honeymoon.” And then, at Cal Ripken’s last baseball game, October 6, 2001, I blacked out. When I came to, I was back in M.E.-land again, full throttle. The next day I had forgotten, and when I sleepily tried to get out of bed, I crumpled to the ground. Oh. That again. I could not get tested for the Rnase-L defect, but HHV-6 was back in spades.

It took seven months to get back into an Ampligen program, this time at Hahnemann Hospital in Philadelphia, about an hour from my home and accessible by train if I did not feel like driving. Once back on it, I swore I would not go off. The costs (including co-pays and testing not covered by insurance) was now down to about $20,000 a year, precisely my after-tax disability income. Our children were grown. We lived on Bob’s income.

But in January 2008, the head of my practice in Philadelphia died. Though he was not my doctor, he was technically the principle investigator on my “study.” In February I was informed that I could no longer receive Ampligen at Hahnemann. To my knowledge, no other Phase III patients (most of whom were patients with severe cancers) were cut off. They reapplied twice, but were denied.

In September 2008, I relapsed. And in the ensuing months, we did the testing that I listed earlier in this (increasingly long!) missive.

So there you have it. I have been back on Ampligen now for ten months. I can read again, I can drive a car, I can walk along Lake Tahoe, and all the symptoms I associate with encephalitis and meningitis – that is, encephalomyelitis – are gone. But I still suffer from pain, and stamina is still a major problem. My VO2 MAX scores remain abysmal. Unfortunately, since this drug is delivered by twice-weekly infusions, I am forcibly separated from my husband of 35 years, which to me is a terrible hardship. But then I see so many others with my disease who have suffered more, and I think I should not say much about being so homesick, about missing my dearest husband so much. After all, Lake Tahoe is not such a bad place to be marooned.

I’m just one case. Okay. But I will close with something an economist once said:

Anecdote is the singular of data.

I’m just one case, among many. When will we study the other aspects of my disease, of our disease? What else do we already know about M.E. (or “CFS”)? How many desperately ill people are out there, undiagnosed, untreated and confused? When I walked to Hahnemann on cold days, I would pass homeless persons huddled over heating ducts, and I would wonder how many of them had my disease.

There are one million people with some aspect of my disease, and 850,000 have no diagnosis. Of those who are diagnosed, only a handful are getting treatment. Where are the rest?

Where are the rest?

31 comments:

  1. Wonderful post, Mary. Thank you for contributing to this blog-full day. I, too, believe myself to be a 25%er. Hoping and praying they look in all the right places and find something/anything to get us out of this hellhole.

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  2. wow,your blog is great, thank you lets hope the WPI get all the funding they need to carry on with there fantastic research....

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  3. You ask a good question here, Mary:

    "Understand that a retrovirus – ANY retrovirus – is going to be transmissible through blood and body tissue because it becomes part of your DNA, and eventually finds its way all over your body. A better question, perhaps, is whether the mechanisms that have been used to keep from transmitting HIV and HTLV will work with a different family of viruses, the gamma retroviruses, where XMRV fits."

    I've been using the AIDS precautions to avoid infecting others since I got this illness in 1986, but how do I know they have worked?

    Patricia Carter
    XMRV+, 24 years M.E.

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  4. It is indeed a sad thing to have to choose between living with your husband or living in a whole different state to get treatment. That should not happen in a country that gives away money by the truckload to others. The United States government needs to man up, amply fund XMRV research and as you mentioned other things already known about ME/CFS patients,and they need to make an XMRV culture test available to every man,woman and child who is suffering with the heavy burden of such a destructive disease.

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  5. Another 25%er (Cheney gave me the dubious distinction of being among the half-dozen most severely affected patients he's seen in 25 years) who has been following your story over time. Glad to hear you're back on the Ampligen, Mary. Was worried about you.

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  6. Thank you Mary for this fantastic blog post. I noticed that you mentioned that the back of your neck hurt 24/7. This happens to me too. My lymph nodes have been sore for the 2 years I have been ill, yet, doctors don't pay attention to them- I guess if I don't have on the size of a walnut, it's normal huh?

    We can only hope that someone "high up" is listening, and then checking out the dusty archives from the mid 1980's...

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  7. What a wonderful blog....thanks so much for posting! Indeed, where are the rest? I think about that a lot.

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  8. Thanks for a tremendously informative post. Sharing test information is extremely helpful as so many of our doctors have no idea what to test nor how to interpret results of the less common tests. As for the questions early on: why don't they look for XMRV in lymph nodes and sputum? I guess, having donated some endometrial tissue to WPI and having heard about other places banking organs and tissues, that they're looking in lots of places and if they could get enough funding they'd be looking everywhere. I do hope more press will mean more funding, for all kinds of significant physical (not psych) research that might get us somewhere new, including get us FDA approval of Ampligen!

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  9. Hello from a fellow ME sufferer

    Great post, very powerful.

    An anecdote is indeed the singular of data. By definition it seems.

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  10. Thank you for telling your story. You are very alive in your ability to touch others with your words. I'm sorry you have to be away from your husband. My daughter, Jocelyn, was with me for a year and I know it's been a blessing for her and her husband to be together again. This illness is evil and deserves no mercy.

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  11. I have ME/CFS. Because of this, I feel incredible sick and grateful for the work that the WPI is doing on my behalf. XMRV seems to be an issue. It may cause Autism and other deseases too. I think just the possibility of this makes it well worth to support more research in XMRV.

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  12. Heartbreaking - I wish every person in government and the CDC would read this, and all the other posts by people with ME/CFS. Thank you for being so open about all your tests and treatment.

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  13. Very good blog, Mary! How you do it, I don't know. Your courage and strength keep many of us hopeful; do you know that? Thank you!

    Is the State of Knowledge about ME/CFS in April just a dog and pony show, to placate us once again?

    We will not stand for it any longer, if so.

    What a data set: possible 22M or more may be infected by now. Criminal, and evidence that insurance companies are running our country.

    The MCWPA hopes to change all that, with public knowledge of what has been done to them and us.
    The ad in the Washington Post on Dec. 6, 2010 was just the beginning. With patient support, more is on the way...watch for it.

    Support the WPI, everyone, and write your newspaper editors and ask why this story is not being covered on a daily basis as it could affect (and infect) every person on this planet.

    Be better, be well, Mary, and do please keep informing and educating us about ME/CFS.

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  14. Thank you for so much information and such a well written blog. It's wonderful knowing that there are people like yourself that are so educated about ME and XMRV. I try to absorb information but it seems like my brain is a sieve these days. It's good to have places like this to refer to when I need to explain something. Well Done and thank you for all your hard work. C.x

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  15. you could write a book Mary! Your blog reads so well, easily and leaves one eager to read on.

    If this wasn't a real life story, I would say "great Mary!" ... but ... it IS your life you're writing about and that's what makes it so so sad. Especially while knowing what it feels like to have this horrendous disease.

    And as for the question: where are all the other sufferers? They are at home, all truying to make ends meet. fighting the daily battle and truying hard to keep their hopes up.
    Day after day, year after year.

    thank you Mary for sharing your story.

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  16. I do have a book manuscript, Els. I was trying to finish it when I lost Ampligen in 2008 and then relapsed for two and a half years. I'm just now starting to work on it again - 650 double-spaced typewritten pages to wrestle into shape!

    But the detour turned out to be fortuitous, because at the beginning of 2010 I learned I had been in the Lombardi et al "Science" study, and that I was positive for XMRV. Kinda changes the book to add a chapter on learning I have a retrovirus!

    Much reorganization to be done, but if I have to publish it myself it will see the light of day.

    The name is ... "Slightly Alive."

    As for those out there bereft of diagnosis, treatment and care, I fear we will find some among the homeless. It is really past time that this disease be made visible.

    Thanks to all the commentators! Bloggorama away!

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  17. Where are all the others? Every now and again I hear of a fellow sufferer who is isolated and confused, dismissed and marginalized by the medical profession in this country.

    Only recently I heard of a 30 yr old woman with FM who 'rarely goes out'
    Attempts to send a message failed. Maybe like me she was coerced into taking drugs for depression, I don't have depression, and haven't had one 'maybe it's in my head after all' day since October 09.

    I am haunted by these stories, people whose families doctors and friends just don't get it.

    Our day is coming, I just wonder how long it will take for treatments to filter through to this backwater of denial and ignorance I live in.

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  18. I know your story well, but never tire of seeing it in print. I look forward to reading your book.

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  19. {{{Mary}}}
    I've read parts of your story before, but was moved to tears reading it tonight. Terrible story, beautiful writing. {{{hugs}}}

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  20. It's probably this way for most illnesses and conditions when they are still trying to raise awareness, but I keep thinking: what better group to overlook than a bunch of people who are, for the most part, just too exhausted to even cry for help.

    In April it will have been ten years since my diagnosis. Several insurance changes later, I have a doc who does not believe ME/CFS is a real illness. I get no treatment whatsoever. I'm very close to thinking death will be a mercy for me.

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  21. No, this is not a normal progression (unless you count what people with MS went through back when they diagnosed it as "hysterical paralysis").

    They have been hiding this one for 25 years - well, longer actually. An informal rule for a Kuhnian paradigm shift is 25 years - one generation - the time it takes for a new group of players to come in who are not so personally invested in the old storyline.

    We've gotten a bit of help in shoving the old way of thinking out of view thanks to the work of WPI, the National Cancer Institute, and the Cleveland Clinic. The naysayers have gone through their usual tricks - "naw, we can't find it," followed by "Lab contamination!" and neither is working. They've got one left, which by this time is going to look pretty silly, "Okay, there's a retrovirus, but there's no proof it actually causes any diseases.". And then they're done. Game over.

    There are changes coming around the corner, and you want to be here to see them. This is the worst time to give up!

    I've been where you are - but then found a treatment that helped me, and boy am I glad I'm still here! I know how hard this disease is. But there is hope. It just feels like it's taking forever to show up. But it will. Have faith.

    Mary

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  22. There is actually a group called the 25% ME Group in the UK, and it represents whoever is severely affected by the illness (by their definition, at least housebound) at any given time, not necessarily those with progressive ME leading to eventual death. The proportion of people with that kind of progressive ME is much less than 25%.

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  23. Thanks, Mary, for participating in the XMRV Bloggerama Day. This is a touching and powerful post and I, for one, had tears in my eyes as I read it.

    I am a UK sufferer, however, I lived and worked in New Jersey in the 90's. In fact I arrived in January 1990 at the ripe young age of 22. I had no idea there was an EBV outbreak at Cherry Hill then. This does make me wonder.

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  24. Mary Thank you for a very informative post.
    Quite horrific to realise how many patients are marginalised and dismissed because our Health Authorities turn a blind eye to what many pioneering doctors are finding.

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  25. The comparison to "The Band Played On" is interesting indeed. Only in this case, the band played for 25 years.

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  26. The band is still playing. Let's hope we hear the final measures soon.

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  27. I recently read the "The Band Played On" and was struck by the parallels as well. Excellent post, Mary. Thank you.

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  28. I found you Mary...and oh how I have been searching. I wanted to put something together, a letter, a post, a FB message, something to once and for all explain to friends what is happening but nothing ever quite touched on what I had or described it right. The words you lifted from my lips, so-to-speak, "how hard it is, how much work it is...no one except family saw me at my worst....every day was a day survived....thought I would recover....we want to be well." I am 51 and have had CFS for 25 years, so much to say but your story is my story with a few name changes! I am alone, have survived day by day working from home for our local hospital (medical transcription) but have come to the point of no return and literally will lose all that I have soon, and I am terrified. Everyone asks, "What's wrong with Debbie? She's a people person, she loved going out. She was so fussy about how she looked and she's a mess now, gained so much weight." Yes, this hurts as much as the physical ailments. The name, "Slightly Alive" is perfection! May you one day soon dance on that beach at sunset. Thank you, Mary, for caring. Your compassion, intelligence and humor shine through the fog. Sending good thoughts, Deb

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  29. What I find interesting is that the doctor I am seeing for CFS said that most everyone he has/is treating for it can point to a viral illness after which they started having problems. It seems to me its a class of retro-viruses rather than one (which makes testing that much harder). It also makes designing scientific studies that much harder.
    Given how hard it was for science to figure out AIDS (which is a comparatively straight forward thing) I am not surprised. I am also not sure that it will help people with CFS as much as many might hope, since anti-retro-viral drugs are nasty and the FDA doesn't like to approve them. If my experience with anti-flu drugs are any indication, any anti-viral/anti-retro-viral drug will have side effects that are as bad as the condition.
    And, having read other posts of yours, why is the CDC even involved? Its supposed to be an agency to watch for massive, threat to national security type pandemics and bio-attacks (I would be willing to bet they are a Cold War creation). Another government agency run amok...no shocker there.

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  30. CDC is the agency in the US that officially recognizes a disease. They are the agency that is supposed to put out information about a disease. When the public (which includes doctors) wants to learn about a disease, they go to CDC's website, where they will learn this is a mysterious disease that can be helped with psychotherapy, exercise, and maybe anti-depressants.

    If you are a reporter, or a family physician, the first place you will go for information about our disease is:
    http://www.cdc.gov/

    And that information is all one big fat lie.

    The only place on the CDC website where my viruses and immune markers are mentioned is in a single (long) paragraph which lists pretty much every test I have ever had, and states these tests are inappropriate for CFS.

    THAT little paragraph gives insurance companis the right to deny coverage of the testing - and most of the immune and viral tests I have cost roughly $500 apiece - and also lies about what we know about this disease. It even says tilt table tests shouldn't be given to people suspected of having CFS.

    And THAT is why CDC is important - critically so.

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  31. PS - I will grant that it was hard to figure out AIDS, but we are approaching the thirty year marker for how long the CDC has known about cluster outbreaks of this disease. You would think that by now they would have gotten past "maybe it has something to do with experiencing trauma as a cnild."

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