The Next Step

The discussion generated by my implicit assumption that Dr. Vernon is guilty by association is defensible in my opinion when the said associate seems to be guilty of crimes against humanity. It sickens me that ME/CFS/X+ patients have to argue about whether their friends are really their friends or not. If we have to wonder, the response is inadequate for the emergency at hand. Pretty clearly our national representatives aren’t going to save us, especially if they are in bed with the people who have been running the concentration camp in which we are imprisoned. Moderate statements about how we are in fact sick shouldn’t placate us any longer, even if backed by a few papers, never designed to impact the treatment of the disease. I’m not really interested in being balanced at this point. I’m mad as hell and I’m not going to take it anymore. ACT UP (links to ACT UP NY and ACT UP civil disobedience manual) seems a better model to me than any moderate approach at this late date.

In response to the post in which I mentioned psychiatric care in the UK, I received this email from one of my penpals there. I am including it with permission:

I was sitting here thinking of all the bad times in the hospital.
…some things included pouring water on my face while I was asleep, tipping my bed up so I fell out. Using tape to tie me to a chair and laughing at me. I was so weak I couldn’t get out the chair.  Taking me for runs everyday. Not letting me rest.
Only allowed to see mum once a week for an hour.  I was only 15 and was allowed  only one phone call a week to anyone.
I also stopped eating and drinking. In the end, I kept managing to run away- climbed out of windows. But they found me. Self harmed because I wanted to die. so had to be watched 24 hours a day and put to sleep with medicine. One time my mum visited me at the hospital and said to me I’m calling the police we are getting you out of here. They are killing you. But the doctors said no.
I escaped and broke a window one time and got quite far. I was so weak and ill. I lay at the side of the road and cars stopped and people crowded round. I thought they would save me. But then someone from the hospital came along in their car and took me straight back. I was disbelieved about my illness and told I was making it up and pushed to breaking point.

When disbelief can do this, no wonder we put up with anyone who says we are sick. But when top CFS doctors (with HIV and GWI experience no less) are publishing papers telling me I need stress reduction lessons, I’ve had it. Not that therapy isn’t a good idea, if you like it, or exercise, if you can do it, but surely it is an abomination under the circumstances that 5 million pounds was spent to prove that badly. How polarized things have become that we have to waste time refuting or being outraged by such idiocy. The paradigm has changed. It’s the virus stupid. Even a doctor should be able to see it. It’s an AIDS-like illness. Infection, inflammation, immunodeficiency. Just because it doesn’t overwhelm the host like HIV doesn’t mean we should throw out everything that’s been learned in that disease. Now we even have a primate model. Not that we should have needed monkeys to prove it when we have millions of human beings freely sharing their by now many viruses. But the macaques show what the so-called Center For Disease Control should have figured out in 1991, when Elaine De Freitas published her paper:
Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. DeFreitas

Just because the disease has obvious psychiatric manifestations doesn’t mean that it is psychosocial in origin. The brain gets sick just like every other organ and when it does, there is content. In the case of X related disease it would appear that it can look like what psychiatrists call PTSD, OCD/PANDAS, bipolar disorder (in adults and children), various anxiety disorders and/or intractable depression. Nobody should understand better than a psychiatrist that inflammation in the brain, even if cortisol/catecholamine induced, doesn’t indicate a weakness or a need to be judged, but sadly psychiatrists seem pretty much universally useless when it comes to this disease, except as a conduit to drugs of limited efficacy or worse. I guess I shouldn’t single them out as all specialties have been equally bereft, but in their case, the perpetuation of their erroneous beliefs has played into the needs of evil elements and thus has been devastating to an enormous number of people. It’s not just that millions of sick people have been discounted, left to suffer in isolation, but an obviously infectious disease has been allowed to spread unchecked through the human population for decades.

With the publication of the Onlamoon/Villinger paper Infection, viral dissemination and antibody responses of Rhesus macaques exposed to the human gammaretrovirus XMRV, it becomes unconscionable to allow the detection difficulties to obscure what is obviously a threat to the health of the species. From the discussion section of this hugely important paper:

The discovery of XMRV raises important questions about its potential as a human pathogen in light of established links of the MLVs from which it is likely derived, to immunosuppression, neurological disorders, and cancers in mice, and established etiologic roles for similar diseases by the retroviruses HIV and HTLV in humans. We reasoned that nonhuman primates would constitute a model close to man with a comparable immune system, and this study is the first to report on the blood-borne infectivity, dissemination, and persistence of XMRV in animals known to express its natural functional receptor, XPR1. XMRV was not only infectious for rhesus macaques, but our results demonstrate that after intravenous injection, XMRV established a persistently replicative infection in select tissues and organs, even though circulation of free virus or infected cells outside of the acute infection period appeared minimal or below detection limits in these healthy animals. It remains possible though, that individuals with lowered immune functions such as RNASEL dysfunction may be more permissive for generalized infection and ongoing virus replication in tissues such as prostate, pancreas and blood. Of note, XMRV appeared to respond to immune activation, since low viremia (2040 vRNA/ml) was detected in the plasma of one of the 2 monkeys administered XMRV proteins adjuvanted with incomplete Freund’s adjuvant on the day of sacrifice. The rapid resolution of the acute viremia suggests that innate mechanisms may largely contribute in containing the virus in the circulation.

It is time for us to stop whining about the decades of neglect and abuse. We need to suck it up somehow and use what we are learning that finally provides some answers. Knowing is still everything for me, though it hasn’t resulted in wellness for myself or my daughter, at least not yet. If wisdom comes from suffering, as a group, we are wise indeed. Far from how we are portrayed, as defeated by lethargy, we have demonstrated a toughness of spirit just to be here still. We need to tap into that collective strength.

Doctors, healthcare workers and their families appear to be disproportionately represented in the patient group. I received a FaceBook message from Gisli in Iceland last night: 

I was reading your blog and the following did cross my mind: Since many doctors have CFS/ME . . I think a group called: –> Doctors with ME/CFS <– could give official international statements about the nature of the disease to other doctors and professionals. Designed as peer2peer (fx. official-statement-website advertised in academic publications ) and themed in a similar human-rights-watch manner as Amnesty International does (+ the peer2peer candid factor), I think it could do good things (perhaps on a bi-annual basis or similar). Some doctors, somewhere, might be interested. The situation is phenomenal and the gulf between doctors and patients is a human rights issue. 

I love this idea. Any doctors and nurses who want to work on this?

And enjoy:
Network – I’m As Mad As Hell!

500 days

It has now been over 500 days since Lombardi et al was published in Science. Yet we are being subjected to the publication of a five million pound study that was designed by people with conflicts of interest to prove that the treatment for ME/CFS patients is exercise and therapy. Isn’t it disgusting? Even though they excluded patients who were really sick or had neurological problems, and included some depressed people, they still couldn’t show more than small improvement in a little more than half the participants with a significant number of adverse events! For a disease that waxes and wanes a little if you do nothing. Lots of people can exercise in the early stages of the illness, until they can’t. Not a single lab test. It’s unbelievable that anyone would be willing to put their name on it. While new people are being infected, new babies being born with it every day, the British Medical Research Council spends a pile of money to try to prove that therapy and exercise are helpful, if you are well enough to attend regularly. What a joke! Except that it isn’t a joke. It’s barbaric.

Professor Malcolm Hooper’s formal complaint:
Magical Medicine: How To Make A Disease Disappear

This morning I got an email from an HIV specialist in the UK who would like to prescribe antiretrovirals for a patient with CFS who is XMRV positive and well informed. He is of course extremely experienced with the drugs. He consulted the necessary powers that be and was told that he couldn’t do it without collaborating with an ME/CFS specialist. An ME/CFS specialist in the UK seems to be a doctor who believes that the best treatment is to talk your patients into exercising. The mail I get from the UK is beyond heartbreaking. It seems to be acceptable to lock teenagers up in psychiatric hospitals, tell them they’re not sick and force them to exercise until they want to die. Why not just euthanize them? Save everybody a lot of trouble and money.

I’ve had a lot of mail lately about the CAA. The recent comments, and absence of meaningful commentary, by Kim McCleary, the president of the CAA, on CNN, are a disgrace: link. And the fact that Suzanne Vernon, the Director of research, has 30 papers on PubMed coauthored by William Reeves, most recently in 2009, pretty much puts the nail in the coffin for me. Is this really the best they can do with the 3.5 million dollars of public contributions in their last three annual reports?

I’ve been asked by several people to call the illness ME instead of CFS. Personally, I don’t think ME is much better. It hasn’t done much for patients in the UK. For now, X related disease works for me, X being not just XMRV, but what looks like in the end will turn out to be several or even many simple retroviruses.

I don’t see how anyone can read the following paper and still be in doubt. It is a public health emergency. To spend years arguing about what isn’t, instead of coming together to discover what is, no matter how devastating, compounds the crime against humanity that has already occurred:
Infection, viral dissemination and antibody responses of Rhesus macaques exposed to the human gammaretrovirus XMRV. Onlamoon

I got home last night from another successful trip to Reno to interview doctors. So far this morning, I’m doing well. I’m planning another short visit next week. Things are coming together very nicely. We have the pieces needed to move forward. I’ve stood beside Judy in the lab and looked at cells. I still don’t know enough to be able to second guess her work. I can’t evaluate the technical piece. But I can tell you that there’s not a mouse anywhere:) and that Dr. Judy knows her stuff. There is a fusion of knowledge and skills happening. We’re not going to wait for the scientific community to prove what should be obvious to anyone studying the pathogenesis in animals of similar retroviral infections. It took Barry Marshall seventeen years to prove to the world that H. pylori causes peptic ulcers, and he had to infect himself to make his point. We won’t ask our scientists to do that this time. Lots of the doctors I’m hearing from already have the illness.

Addendum… about disclosure

My reasons for disclosing personal information have nothing to do with feeling pressured. I started this blog, because I was emerging from incredible isolation and confusion into a place where I could put all of these awful experiences into context. Sharing has an important place in all this because isolation is so often a result of the disease. Never have a group of patients needed community more. I often think that there should be a way for CFS patients to live together communally, for company and to share services and economies of scale.

One of the reasons that people become doctors is because they believe that it will give them some kind of immunity when illness hits home. Most doctors have little awareness of this, are in denial, and it causes a separation between doctor and sick patients. When the patient is a doctor it is even worse, because the doctor doesn’t want to identify in any way. My colleagues to whom I went for help were the first to abandon ship, in order to disidentify. It was much easier for them to think that I was weak or overreacting to little things. The LLMD’s to whom I eventually turned validated the experience, but were engaging in voodoo for the most part. The fear and isolation I was experiencing made that validation and any hope of improvement, especially for my daughter, too compelling to listen to my own doubts. Their treatment required a suspension of disbelief on my part in order to participate, but I did anyway.

I got mail last night concerned about my dignity. I don’t feel undignified for sharing experiences that others may be able to use to help themselves or their loved ones. There is redemption in helping. What is undignified is the harm that is done to the individuals of this community on a daily basis because of the disbelief that comes from the complete misunderstanding of the disease. I want to make it clear that there is no immunity. I had a privileged upbringing and life. I was a doctor. I’ve heard from lots of doctors who’ve had experiences like mine. The doctors and lawyers, scientists, rich people are just as isolated and without help as everyone else. The disease is a great leveler.

I am so far past caring what anyone knows about me. I have nothing to hide. I’ve been wronged over and over and so have many of you reading this. I get contacted regularly by people who want to die because they have no hope. I wrote what I did yesterday, and other personal things at other times, in hope that it will help someone out there to realize what I have come to realize. It can all change in an instant and you are not alone.

Politics and disbelief

“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth.”
— William Faulkner 
The piece of my last post that generated the most heat was my disavowing a real knowledge of the politics, but noting lots of contentiousness. Let me start by saying that I wasn’t meaning to imply a lack of interest, but of expertise and energy. I certainly didn’t mean that I couldn’t relate or had been spared; I got enough experience in LymeLand to get the flavor, on a smaller scale. It’s just this particular cast of characters that is new to me. It is true that I managed to escape being labeled or treated for most of a decade, until my family got sick too, but at that point I lived it.

In any scenario there will be individuals who are dishonest or simply assholes. There are others who are being true to their beliefs and intentions, but get caught in the cross-fire because of honest disagreement. The bigger issue I see expressed in my letters and what I’ve seen on the forums is a disaffection with the CAA. I haven’t spent any time in their sphere, but a quick look at their annual reports show that in 2009 they took in $1.7 million and spent $700,000 on research. In 2008, it was $1.5 million in and $350,000 out for research. In 2007, $3.3 million in and $265,000 for research! Here is their mission: Mission: For CFS to be widely understood, diagnosable, curable and preventable. Strategy:To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. I think it’s safe to say they’ve failed rather miserably, even without being privy to all the sordid political details. In the world of political organizations, everybody gets to vote with their feet and checkbooks.

Every once in a while somebody writes something that indicates that they think that Ali and I are accessing treatment and medical care unavailable to others because we are privileged. We have Blue Cross Blue Shield of NM, a subgroup called The Pool. It is state mandated poor people’s insurance. We qualify for a reduction of premium by virtue of our income being some allowed amount above the poverty guidelines for a family of four. Our medical expenses have been running almost half of my husband’s take home, and until recently he was the only one working. 
The reason I don’t have Medicare is because I was turned down for SSD. It took me a couple of years to apply, because I couldn’t believe I wasn’t going back to work and I thought it was retroactive. Then it took two years to get to the hearing with the administrative law judge. The judge was openly hostile to the idea of a doctor who could still read, write and use a computer, but not make a living. He had over a thousand pages of medical records, including a near death experience, and he thought I was faking. After the hearing he ordered a new psych eval. Because my house was going into foreclosure, a dire circumstance petition was filed and the judge turned me down. My case is in appeal.
My financial circumstances have also been adversely affected by the disbelief of my disease in my family of origin. I know from my mail that this is not a rare story. Many have been abandoned by family members who would have helped had they known that it was a real disease and not a character flaw. For some, the disbelief has been as damaging as the disease. My guess is this will strike a chord in many.

11 months

My trip to Reno was very productive. Energizing even. No crash this time (knock on wood). The nuts and bolts of the practice are getting worked out, but the exciting part to me is the synergy of like-minded people with complementary talents and skills. Never have I been exposed to a work environment where everyone is so passionate about what they are doing and why. All for one and one for all.

I am tolerating the stress pretty well. I bounced back from my crash/viral infection following my last trip fairly quickly. I regularly have waves of symptoms, but at a level where I can ride above it most of the time. The work is actually providing some escape from the physical reality of the illness. It’s a bit like carrying around a ball and chain all the time, but it reminds me to keep looking for the key to unlock it. For me, the illness is like living with a very strict Zen master. If I engage in any serious hand wringing, I get a rap across the knuckles. Emotional PEM (post exertional malaise) is almost instantaneous for me. Tough teacher.

Ali is not doing as well as she was a few months ago. I can’t even tell you if she is better or worse than when she started antiretrovirals, because some symptoms are still better, but she has new ones (inflammatory). It is not at all clear why she has taken this downturn. She is considering holding AZT to see if things are better, worse or no different without it. We don’t have clinical evidence that both RT inhibitors are better than one and AZT toxicity could be contributing to the energy deficit. Anecdotally, tenofovir has a clearer positive clinical effect than AZT. There are a few people who are improved on tenofovir alone and AZT alone seems to have little clinical impact. We experienced the most obvious improvement from antiretrovirals when we added tenofovir as a third drug. Ali’s gut feeling, and mine, is that AZT is not what is making her worse, but the drug has a short half life and it shouldn’t take long to see if she gets a lift when it clears her system. There are a few people that I know of who have stopped AZT for suspected side effects or mild anemia, but they are back on it or considering being back on it. I have heard of only one patient that stopped it for profound anemia requiring epo. At eleven months, we have no signs and have heard no reports from others of changes consistent with lipodystrophy or muscle atrophy. The only clear sign we have of toxicity is the expected macrocytosis and compensatory decrease in red cell number. However, there are a couple of patients who report improvement on tenofovir and raltegravir without AZT, probably an easier regimen to tolerate for the long haul if effective.

One of the things I’ve learned about the lay of the land is that scientific research happens in individual labs that generally don’t share with one another. The credit and intellectual property issues preclude much cooperation. I have a great deal of trouble with it, because real collaboration between scientists that wanted to help each other might illuminate rather than obscure the truth. Physicians are similarly isolated, but the reasons are different; it’s more about being over-worked, unsupported and disengaged. For most, the reasons why they became doctors are no longer anywhere in sight.

People write and ask me if I agree with this or that piece of the politics, but the medicine and science is all I can handle. As an observer, I am struck by the divisiveness in the ME/CFS community, when so many worthy common enemies abound. I am a newbie to the politics. I diagnosed myself when I read the Science paper, fifteen years into my illness and six years into my daughter’s. I am not typical of ME/CFS, by history or current clinical picture. I could still exercise for the first ten years of my illness and my symptoms were primarily neurological and vascular. Ali had a history of acute Lyme and subsequent crashes which responded to antibiotics. Neither of us had a viral onset. Childbirth and puberty were our triggers. The revelation was not about having a diagnosis of CFS. It was about having a retrovirus. That realization cleared up much of the mystery for me. With everything I’ve learned since, I still believe we are suffering from the effects of one or more retroviruses. A sad reality, but also our best hope. In the end, it will be about having an infectious disease, not a syndrome with a terrible stigma. Personally, I’d rather be a leper, than a psychotic malingerer. And with that happy thought, is there some way for us to put aside the internal strife and turn our attention to our common goals?

Bench-to-bedside is a translational research term used to describe the process by which the results of research done in the laboratory are used directly to develop new treatments for patients. The close relationship between the research lab and the clinic should take it still farther – the clinical findings will drive the direction of the research. Dr.’s Mikovits and Lombardi are committed to this kind of collaboration. In fact, an interdisciplinary blending of ideas has already begun. We are learning to speak each others’ languages. The camaraderie engendered by being down the hall from one another will nourish all aspects of the real work, which is to heal the patients.

Interview by Cort Johnson with more information about the clinic.