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 love this idea. Any doctors and nurses who want to work on this?
Network – I’m As Mad As Hell!