Julia Hugo Rachel
A Plan for the Future
This is Julia Hugo Rachel. Like millions around the world I was accused of having a mental illness, had my child taken away from me and spent years in mental and physical agony. Then I found I was not mentally ill but instead had a virus and was cured. There are many people like me and this book, Viral Assault, will show victims, families and friends that there is hope. This is my story.
I first met Laura when we were both still living in Northern California. It was the late ‘90s and we each had followed our love of horses to the same ranch. She was boarding a couple of horses there while I was teaching a young girl how to jump her own horse. I remember seeing myself in the girl I was teaching, and getting to share what I knew about horses and spending time around them was always a calming activity.
It’s always difficult for me to let down my guard to allow someone in, especially to show my vulnerability, but Laura and I slowly became friends over our shared interests and it stayed that way for years. She was always there for me, especially when Blake’s health issues began as well as my own. I could confide in her as we rode horses or sat around the table at lunch and I began to feel she truly understood me. She was a take charge kind of woman, always clear about what she wanted and what she says so I call her Patton after the World War II General.
And while we were close in age, shared a love of horses, both had a son and so on, the health side of our lives began to look eerily similar as well.
When Blake and my own health issues began, Laura was one of the first people I would tell. After an especially difficult doctor's visit, I would share with her my struggle. The sharing would range from learning about the new illness Blake was coming down with and I eventually opened up to her about my mother as well. Laura became something of a sister, the sibling I never had and her encouragement did wonders for me and for Blake as we learned to navigate the terrain of (what we would learn to be) CFS and all the other trials of motherhood.
She had had similar struggles with her own health but had always just put it down to working too hard or flu or whatever. But things changed when her own son seemed to be getting sick.
He was a few years younger than Blake, a tall, athletic boy, just like Blake had once been.
But as he progressed into high school, playing baseball and basketball began taking more and more of a toll on his body with each practice, game and scrimmage. He would sleep for 16 hours at a time after an especially grueling game, trying to gain back all of the energy he had lost through the course of the day.
The next day at practice, his eyes would get a little bit glassy with dark bags underneath them. His coach even accused him of being high on pot at one practice because he acted so disoriented and lethargic. The sickness and whispers of what was going on with him brought him to an even deeper low, he gave up on sports and on school. His heart wasn't in it anymore.
While she worried about her son, Laura began to think for the first time what she thought was normal about her own life might in fact be a sickness.
“Over the years, there have been days when honestly I've thought that I had something terminal. I thought that I was dying,” she recalled. “There was extreme exhaustion to where ... I mean, I'm tenacious and I do not stop, work all the time. There are days when I would just put my head on my arm, like leaning on the counter, and think that I was too tired to even take another breath. I would deal with it by just laying down and sleeping for 30 minutes or 3 or 4 hours and that was the only thing that could keep me going.”
Like so many people who live with illness as a constant, feeling unwell became the new normal. At first, Laura visited doctors none of whom knew what was wrong with her and all of whom dismissed her concerns.
“For years, doctors told me that I was a hypochondriac and it was all in my head,” she said. “The diagnosis was always the same so I just stopped going to doctors and accepted that I would have to live with feeling really ill for much of the time.”
Laura watched as her son graduated from high school in 2014 and went on to the fire academy and graduated in May of 2015, riding the uphill of the CFS rollercoaster. After graduation, he contracted chickenpox and he rapidly spiraled down into a decline that Laura had never seen before.
His weight went from 227 to 176 and he started to look really sick with no energy and bouts of deep depression.
“It was really frightening,” said Laura. “His own father called me up and accused me of letting my son become addicted to meth. Even he couldn’t see that he was really sick.”
But Laura’s life took a turn for the better when she met and married her current husband. Even better, given the crisis she and her son were confronting, he had health insurance which covered them both and so medical treatment became a real possibility.
A few years later she had married and secured health insurance, which allowed her and her son to have their blood tested to confirm the fears they had had for years.
“Financially, I thought ‘OK, now is the time to step off the ledge and go for it,’’ she said.
So, in the winter of this year, they made the trip to have the tests conducted to officially get answers to their ailments. Laura met with a nursing assistant for Dr. Montoya and the reception was a complete contrast to any doctor’s visit that had happened before. Instead of dismissal, there was acceptance. Instead of rejection, there was immediate recognition of the symptoms and the reassurance that something could be done.
“Even now, it just gets me because nobody's ever really believed me. To be understood, I mean, the P.A. listened to everything and asked me questions to where it was obvious that I'm not crazy. It's real, I've been validated,” Laura said, tearing up. “It changes the look on the whole thing. It's like now I feel like because I asked, ‘Am I doing harm to myself when I work through my fatigue?’ She said, ‘you know, you're going to need to take time to heal. When you feel that tired, you need to listen to your body and rest.’"
After the blood had been drawn, they waited anxiously for the results which would show clearly how much infection their bodies were holding when compared to a normal baseline of 21. The results were staggering:
Laura: almost 569
Her son: in the 300s
It was blessing and a curse all wrapped into one, having an answer, but the answer being that they were both very, very sick.
In addition, Laura learned that, among others, she had the Herpes viruses. Both she and her son also tested positive for Epstein Barr which is often a precursor to CFS.
Five months after those initial tests, Laura is now preparing for her first appointment at Stanford Medical Center. With her new knowledge and confidence, Laura looks around and sees so many others that seem to be suffering as she once did: alone and in pain.
“It's absolutely amazing. Everyday that I'm around people, there's somebody new that I go "oh man, I wonder if she's got viruses," said Laura. “The fact of the matter is there's not the help out there that people need. If I went around and suggested that the friends that I think have them go get tested, my gosh, it would be crazy. There's not enough help.”
But Laura and her son are among the lucky ones. They may have suffered for years but they are alive and have hope. Others have not been so fortunate.
Rob Guzzo followed his father’s path into the military after completing his college degree, enlisting even though his college degree meant he could have entered as an officer. Bob recalled Rob wanted to spend time in the thick of war, not filling out paperwork.
“I'll spend more time operating than if I took an officer career path and then maybe I would do one, maybe two operational deployments, and then I would go to a desk," Bob remembered his son saying.
Rob’s path to the Navy nearly mirrored his father’s. Bob had joined the Navy after a year of college. He had become dissatisfied with the university scene and couldn’t get into the curriculum, so in 1976 he joined up, working as a medical corpsman for a few years before making his way to what he really wanted, joining the Navy SEALs. Bob served a total of 27 years before retiring.
Rob was born into this military-centric world as his mother was also involved the military in the medical service corps.
“I would bring him in, so he was involved, and directly involved, with the SEAL team from a very young age,” Bob recalled.
Bob’s last military post was in the Pentagon where he was working when on September 11. Although uninjured when the aircraft was flown into the building, the incident had a big impact on Rob who was in college but then determined to follow his father into the Navy.
“I wasn't going to be a negative force in his life,” said Bob. “He knew what he wanted to do. I knew he knew what the teams were all about, all my friends interacted with him all throughout his life. It's not like he was going in blindly,” Bob said.
Rob entered the Navy with the Intel program in Virginia before his father drove him out to California for BUDS training, Basic Underwater Demolition SEALs. He was following right along in his dad’s steps even outside of school and fraternity life. Bob was especially excited to have Rob be part of the program because a friend of his from training and his first deployment was the commanding officer of the underwater demolition training, and he knew he would keep an eye on his son.
In 2006, Rob was deployed to the city of Ramadi to combat a growing insurgency inside Iraq. Ramadi was considered a critical target and pivotal in the fight to counter the insurgency. It proved to be an exceptionally violent and bloody example of urban warfare with the insurgents using chlorine gas, suicide bombers, snipers and IEDs to defeat the American ground forces. While the insurgents were expelled from the city, there were heavy casualties on the American side.
Two of Rob’s best friends - both SEALs - were killed. One was the first SEAL killed in Iraq, Mark Lee, while the other friend suffered major injuries only to die from complications in surgery later.
When Rob returned back to the States after his six month deployment, his family noticed that something was different about their 25-year-old son.
It was Rob’s mother who noticed first.
“When she first saw him, she knew right away something was wrong. She said, when she had called me, ‘Something is wrong with Rob… I just know," Bob recalled her saying.
Of course Bob had experienced similar feelings himself and wanted to believe that Rob would get over it.
“I was just taking it that it would work out, I'm sure he was kind of moody, kind of still coming off an operational tour and just wanted to be with the boys and have a good time and raise hell,” Bob said.
But things only seemed to get worse.
“Rob wasn't really a temperamental kid, he was a sensitive kid,” Bob said. “He wasn't quick to fly off with the temper. That was one of the things we noticed right away.” And then there was the heavy drinking, the reports of fights and behavior that seemed completely out of character.
Rob was also having trouble sleeping, felt exhausted much of the time and even the smallest thing could provoke a violent rage. Then he started showing up late for work and his communication with his own parents fell away as he withdrew further from family and friends and into a darker world of his own creation.
Using the network that is accessible to many veterans, Bob asked old friends who were still in the service to check on Rob and make sure he was ok. The reports that came back were at once reassuring and unhelpful.
"Yeah, he's like everyone else, he's like all these other guys that just got back," they told Bob.
Rob himself was reluctant to seek help within the Navy. He didn’t want to see a doctor because a report would be written and he would be considered unfit for duty and if he complained of depression he might be found medically unfit, kicked out of the SEALs and given a desk job.
"My career will be over," Rob said to Bob when his father tried to push him to getting psychological help. "Dad, you gotta trust me on this, that's what they're telling us."
The second sentence was what really stayed with Bob though. Who was telling him not to see a psychiatrist? Who wanted Rob to continue suffering the way he was? Why wouldn’t they want him to improve?
Bob found that senior leaders among the Navy were relaying the message to stay out of psych visits and to keep quiet any type of mental treatment they were getting.
‘If they went to a psychiatrist and said they're having problems, they would get pulled out of the operational team,” Bob explained.
Bob and Robin privately arranged for Rob to see a Post Traumatic Stress Specialist, and he even took his son down for the first visit, showing moral and emotional support for Rob in what he knew was going to be difficult situation.
Rob relied on that support through the entire first appointment, even at the point when the psychiatrist asked him to leave the room to allow for a private portion of the session between Rob and the doctor. As Bob began to rise from his seat, Rob piped up.
“No, my dad can stay," he insisted. "He can hear anything."
Rob’s appointments continued on a regular basis of two or three visits a week and his parents began to see some progress.
“I think the fact that he was talking to someone, and the fact that it wasn't going to impact his career that he was talking to someone, that he started a little bit better,” Bob said.
Breakthroughs came when Rob finally began discussing the specific events from his time in Ramadi. He was questioning some of the decisions he made, specifically two instances, which his father called issues with “rules of engagement, some of the decisions and actions he took.”
Rob was suffering from survivor's guilt, trying to decide if what he had opted to do in such a high intensity and high risk environment was really for the greater good.
"Based on what I'm hearing, and what you've told me, you followed the rules of engagement,” Bob told his son. “Had you not taken the steps that you took, you would have been compromised, your team mates would have been compromised. It could have turned into a mess because a lot of people could have been badly injured or killed.
Rob eventually connected with a Navy psychiatrist who told him he wouldn't document anything so as to keep the notes off of Rob’s file. But even with the continued visits, Rob’s conduct issues continued, drinking, showing up late, getting in fights, all the symptoms that might be expected from Traumatic Brain Injury.
That behavior began to catch up with Rob when there was talk of “administrative boarding him out of the Navy.” At first, the Navy wanted to give Rob a medical discharge which would have impacted his income and to claw back the bonuses he had received for his service in Ramadi. But Bob was able to call in some favors and he eventually was given a normal discharge and the bonuses remained.
To Bob, all this back and forth by the bureaucracy was both dishonoring his son’s service but also somehow making him suffer for getting injured.
“(They) need young bodies, young trained SEALS that are going to deploy back to back to back to back. If you can't do that, they really don't have use for you. They look at shuffling these people off to different little areas and kind of hide them, which was even worse for these kids because now these kids are feeling even more isolated, even more drawn out, because now they know they're being pushed around as undesirables. That seemed to make the problem all the more worse,” Bob said.
Once out of the Navy, Bob was assured it would mean Rob would slowly begin to recover.
Rob was living in San Diego and started attending college again, but this time at San Diego State, where he studied for a master’s degree in kinesiology, the study of the mechanics of body movements or sports science. In the meantime, he also started going to the VA for additional treatment where he was getting medication and visits with doctors to discuss his post traumatic stress and brain injury.
Rob even began to get involved in the acting scene, taking small, background roles on major motion pictures as well as acting classes. His biggest small role of the time on the movie Transformers.
His life seemed to be getting back on track, until one day on set when he had a seizure. Although it was a small attack, it was enough to get him bumped from the movie. More seizures followed in school and at home and it seemed that his health was declining once again.
But then he learned that unknown to him a one night stand two years earlier with a girl he hardly knew had resulted in a child and he was now the father of a two-year-old girl named Jenna.
“That was a tremendous boost for him. It really picked him up and I think it gave him purpose, something that he had to live for because he had to take care of this baby girl that he had just met.”
“It was like he was a completely different person. So different that our anxiety was almost completely lifted, he wasn't drinking, he wasn't going out, a little bit, but appropriately, responsibly. He was going out with his buddies, but he always say, ‘Look, I can't go stay out late, I've got Jenna tomorrow, I've got to pick up Jenna in the morning.’ It was a great thing for him,” Bob said.
For five months, Rob was a changed man. Everyone could tell how much he cared about his daughter and how much her presence in his life meant to him. His outlook had changed, and Bob was pleased that the son he had thought he had lost was returning to him.
On Veterans Day 2012, all the pain nobody could see hidden in Rob resurfaced once more.
Rob had gone out to celebrate the holiday with some Navy and Marine friends who had just returned from Afghanistan. It was an evening of relaxation, drinking and story-telling.
The group returned to Rob’s apartment where his girlfriend was asleep in the bedroom with his dog curled up next to her. The two friends crashed on the couch while Rob sat down in front of the computer. He brought up pictures of his daughter, looked at a picture of Mark Lee, his SEAL friend who died in Ramadi that he kept on his desk, looked at the two Trident pins, his father’s and his own, that sat next to the picture on the desk.
Then he reached for his pistol and with one shot to the head, ended his life.
“That he got to the point where he made that mistake that he couldn't take back. I don't think Rob's intention was to take his life at that moment. I think he was just so depressed that he got to that point and stepped over it, and once you step over that point, it's gone. You can't take it back,” Bob said.
Suffering in part from the survivor’s guilt that so plagued his son, Bob has gone back over and over again over those final few months to see if he could have done something different that would have saved his son’s life. As re recalls it now, it seemed as if Rob was on the road to recovery.
“When Jenna came into his life... he was a different person. He was back to being the Rob that we knew. Cheery, upbeat, outgoing, loved life, lived life. He was a great athlete, he was very intelligent, and again something triggered him that he was back in that dark, dark part that we struggled through for eighteen months,” Bob said. “He had been out of it for six months.”
But for others who are more familiar with the complex path that both PTSD and TBI can take, the outcome of Rob’s illness was not particularly unusual. The depression and the violent mood swings along with the drinking and the withdrawal all fit into a pattern of trauma that can so often be exaggerated by the prescription drugs that ignorant doctors prescribe. The seizures towards the end of his life suggest that the wrong mix of drugs were making things worse and not better.
Today, the Veterans Administration say that 22 veterans commit suicide every day or one every 65 minutes. While there are many causes that create such a tragic outcome, more research is urgently needed to pinpoint those causes and the treatments that can ensure that the future generations of Robs who serve this country so bravely can be assured of more compassionate care when they return home. More critically, the statistics are not broken out to define those who commit suicide as a result of PTSD, GWI, CFS or simple depression from old age.
In fact, it is very hard to pinpoint not just how many veterans commit suicide as a result of PTSD but how many commit suicide as a result of CFS. Anecdotally, a statistic of 3% of all those suffering from CFS are alleged to commit suicide which would amount to 30,000 people out of a population of 1 million. But even then, there is disagreement because some doctors estimate the US population of CFS sufferers as 4 million which would produce 120,000 suicides. Again, nobody really knows because the research has not been done.
A much cited academic study was published in 2006 which suggested heart failure, suicide and cancer accounted for nearly 60% of all deaths associated with CFS. But, the sample size of 166 was so small that it may be statistically meaningless.
What is clear to me I that as long as any of these illnesses are treated as a psychological problem, then we will never get to the root causes. Not only are there a range of illnesses that can lead to CFS but each illness – including PTSD and GWI – have a biological component as well and until all the contributory factors are clearly identified no effective treatment will be possible. This in turn means that specialists in the different illnesses must combine their knowledge to arrive at a common understanding.
In 1955, there was a sudden outbreak of a new and mystifying illness at the Royal Free Hospital in London when 300 people got sick. The hospital was closed for three weeks, patients were evacuated to other treatment centers around the city and an urgent investigation began into the cause of the illness. Pathology exams suggested that something unknown had triggered an inflammation of the brain and spinal cord but that was as far as the diagnosis went. A more formal study 20 years later concluded that the outbreak could be attributed to mass hysteria.
In the 1980s, psychiatrists in the US and UK involved in investigating a similar outbreak in Lake Tahoe, Nevada decided the illness was largely psychogenic, a result of patients believing they were really ill and allowing themselves to become deconditioned. The researchers investigating the Nevada incident believed that “CFS was a malady fabricated by malingerers who were simply ducking life's responsibilities.”
As recently as 2011, a five-year study of CFS funded by the UK government, recommended cognitive behavioral therapy and graded exercise regimes as treatments for the disease. “The patient community has expressed both anger and despair. Anger because the media, along with many health professionals, has concluded that people can recover from ME/CFS through a simplistic approach to management involving exercise and positive thinking. Despair because the findings from the PACE trial have not been supported by patient evidence."
Such a dismissive response to an illness that impacts millions around the world has been a hallmark of the medical establishment for decades and continues to this day. Funding in the States from official bodies such as the NIH has been miserly and bears no relation to the scale of the illness. However, there are small outposts of medicine where both research and treatment is under way.
Leading the charge is the Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative at the Stanford School of Medicine at Stanford University in California. The group is led by Dr. Jose Montoya, Professor of Medicine in the Division of Infectious Diseases and Geographic Medicine, who has reached the status of something approaching sainthood in the CFS world as he is so often the doctor of last resorts who has been able to help hundreds of patients.
“It is common for physicians in the United States to take a skeptical position towards these patients’ symptoms, and this skepticism is unfortunately enhanced because most (if not all) results of conventional laboratory and radiological tests are normal.
“We hope to see our work change the lives of patients suffering from ME/CFS, CLD, and other chronic diseases. We hope to identify biomarkers and other tests that can be diagnostic of these diseases so that appropriate and specific treatments can finally take place to end these patients’ ailments. We aim to see one day that these patients will be validated by their health care providers and be fully integrated back into mainstream medicine.”
Although CFS may only have appeared on the medical radar in the early 1980s, it has probably been around much longer although there has been no effective collation of data to support such a thesis. Montoya is of the view that the problem for CFS likely began with the CDC investigation into the Nevada outbreak.
“The CDC sent a team of two young investigators to that epidemic. I think that what looks incredible, and this now is my opinion, these two young CDC officers were weak, in terms of clinical medicine, internal medicine, because it looks like that's where we can trace the origins of this incredible, catastrophic, agency-level failure in recognizing this as a real disease, because they were responsible to report back to the agency what they saw and that they found,” said Montoya.
“I think ... if they would have seen patients with the heartbeat failing, heart failure, strokes, they would have said, ‘Wow. Something is causing the strokes in this population.’ But at least maybe have the humility and maybe if they were more skilled they would have thought more carefully, ‘Well, there is something here that people with productive lives who do not want to be sick who will lose more being sick than not, and look at all these things, at these neurological funny things, and they have inflammation.’ I cannot think of any other possible reason why in the early '80s this took that spin,” Montoya said.
It’s also the case that the exposure of CFS coincided with the outbreak of AIDS. Congress responded to an intense lobbying effort by the AIDS lobby and money poured into the health care system to first find a cure and then treat the patients. The result of that focus led to other illnesses getting few research dollars and little attention.
“(There was) competition for resources,” Montoya said. “It was June or May of 1981 when the first four cases of AIDS were reported in the New England Journal of Medicine and by the CDC as coming from LA,” said Montoya. “Then the story of AIDS begun... then it was recognized as a pandemic, a phenomena.”
As one critic points out, even when the CDC was told by Congress to allocate $1 million to CFS research, they failed to do so.
"I find it rather incredible that a federal health agency created to track and curb outbreaks of disease not only neglected that duty but found great sport in patients and their problems," said Hillary Johnson, author of a book on the topic. "CFS was mocked in the corridors of the CDC, and an assignment to investigate CFS was considered to be the death knell for one's career as a researcher."
This was Montoya’s exact experience. He was warned by his professors and his mentors that focusing his career on the study of CFS would be a death sentence and that he would end up in poverty. Undeterred, he has become one of the world’s foremost experts and has taken the approach of exploring whether infection can be a trigger for these patients’ ailments.
But even now, all these years later, CFS a mystery. One reason for this is that it appears extraordinarily complex. It may be that it is an infection, which is why so many families seem to become ill.
But few patients that Montoya sees actually look alike and present either the same symptoms or a common diagnosis. Symptoms can even change over time but just how they will change or even if they will change at all is always uncertain. And just why the symptoms change in some patients and not in others is also a mystery. And all of this will remain a mystery until research dollars are brought to bear.
“The disease suffered from a major blow that came from official, highly-regarded scientific and public health entities in the United States such as the NIH (National Institute of Health), that for years considered the disease either implicitly or explicitly a disease that had a psychological nature to it. They did not spend their research dollars like it deserves,” Montoya said.
From 2010-2014, according to NIH categorical spending, just $5 million was allocated to ME/CFS spending each year, compared to $115 million on MS research.
The disease that took the attention off CFS comes into play again when we consider that just one year of NIH spending on HIV/AIDS is the equivalent of about 600 years’ worth of ME/CFS grants.
“At least by the research dollars, even if it was psychological in nature, these patients need to understand what is wrong with them. It could be housed into the umbrella of undiagnosed illnesses. That's a huge reason why we have not had the progress that we have made in medicine in other diseases,” Montoya added. “Thirty-five years of the NIH, at least the NIH, saying either, ‘This is not important in our research agenda,’ or in some cases saying, ‘This is psychological.’”
Understandably, Montoya and all other health care professionals with experience of CFS argue for more research dollars and a more coordinated effort to track down the origins of the illness.
“These patients...some of them are committing suicide, others are coming down with cancer,” he said.
He likens our ignorance about CFS to that around cholera in the 1800s when thousands of Londoners lost their lives whenever an outbreak occurred in England.
“It was ascribed to God's punishment, bad air,” Montoya explained.
It wasn’t until a man named John Snow linked the illness to contaminated water supply that people began to realize that what they were experiencing was due to bacteria and not the wrath of God.
For now, CFS hides under the same umbrella of ignorance, fear and a lack of resources.
What Montoya has learned is that there are a broad range of illnesses that can in some way trigger CFS. Although some people who get sick with Epstein Barr do not get CFS, it seems to always be the case that someone with CFS has had a primary illness that has in turn provoked CFS.
“I think that what is happening is that we can do a blood test or whatever and say, ‘Hey, you did have Q fever,’ or EBV. In fact, what it's doing is reactivating another infectious agent, like a second level,” Montoya explained. “Perhaps there is a compartment somewhere in the body that we have not explored properly.”
Though vague for now, he said this compartment will likely hold the key to explaining the reactivation and subsequent inflammation that appears with CFS.
“In some individuals...there is a genetic structure that has been selected by millions of years that favors CFS. For those people with that gene structure, that inflammatory response is disproportionate to what it should be. Any infectious agent that has the capacity to trigger a disproportionate inflammatory response has the potential to cause chronic fatigue syndrome.”
Montoya has three main goals for treating CFS patients:
1. Medical societies, like the American Medical Association and the American College of Physicians, issue a formal apology to the millions of CFS patients who have been ignored and overlooked for too long.
2. $100 million in annual funding over 15 years granted by the NIH for CFS research.
3. Create “centers of excellence” to be created across multiple disciplines where researchers with different expertise get together and bring all of their information to the table as a way to communicate and share what is known and what still needs to be discovered.
“This is an emergency and we need to solve this sooner than it took to solve other diseases,” said Montoya.
Recently, the Institute of Medicine (IOM) was charged with the important task to review over 65 years of clinical and research literature on ME/CFS, 9,112 articles in total. Their final recommendations propose new diagnostic criteria, a new name, Systemic Exertion Intolerance Disease (SEID), and an increase in research funding.
According to the Stanford Medical Center, “these provide the ME/CFS community with a step forward into changing the narrative of the disease and significant progress in ensuring that patients will be properly recognized and supported by their health care providers. We at the Stanford ME/CFS Initiative, echo the message IOM has put forth: this is a complex, multi-systemic and crippling illness in much need of multidisciplinary research approach that must always take heed of patients' concerns in order to improve diagnosis and treatment once and for all.”
Proposed Diagnostic Criteria for ME/CFS
Diagnosis requires that the patient have the following three symptoms:
1) A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
2) Post-exertional malaise,* and
3) Unrefreshing sleep*
At least one of the two following manifestations is also required:
1) Cognitive impairment* or
2) Orthostatic intolerance
*Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.
This book has been a real struggle for me to write. I have had to reach deep inside to tell my own story which is filled with grief, terror and an abiding sense of failure. It was not just having CFS myself that was so difficult but also watching the son I love suffer and nearly die, hear my mother be so dismissive of my son’s illness and my struggle to find him good treatment, the alienation of family and friends, the loneliness and finally the sense of achievement as I brought Blake back from the brink.
But this has never really been about me. Rather it’s about the millions of people who have also suffered either with the illness or whose families have struggled with the depression, the exhaustion and the suicides that have resulted. I’ve spoken to many of you, had contact through my blog and felt your pain. It’s those stories that have pushed me forward, far away from the comfortable anonymity I prefer so that I can raise awareness and hopefully find the money and resources to find a cure.
I try to keep the same positivity that Montoya maintains, but in reflecting on my own life, especially during Blake’s most severe years with the illness, make me think of that portion of my years as a sad time. So much pain and suffering and yet this is a story that must be told so that the world can hear and act.
Last month, I was at an appointment with my arthritis doctor. He has asked me what I was doing and I told him I am working on a book project. He asked “what about?”. We have talked about ocean swimming, sharks, open water gear, diving and sailing and always do so with joy and enthusiasm with each other. When I answered “it’s a book about Chronic Fatigue Syndrome, PTSD and Gulf War Illness”, his eyes literally glazed over and he looked down at my chart. At that second, I smiled to myself. There was a time when I would have felt a pang of hurt at the lack of understanding, but this time I smiled. I thought “that glaze is going to get wiped off your smug face soon enough”.
A researcher I have grown very fond of and whom I admire greatly said it best in an interview last year. Here are some of his words.
“Those that have served with Gulf War Illness, suffer in silence because they do not want to speak negatively about their Country which they Love”. Gulf War Illness is in existence because of an externality of War. An unintended consequence. In the world of Intelligence, unintended consequence was a phrase I became all too familiar with.
“Doctors don’t believe Chronic Fatigue. Therefore it doesn’t exist”. If you don’t believe in something, then how can it exist? If your doctor doesn’t believe it, you can bet it won't be recognized, therefore won't be treated.
As I move forward in my life, I become more and more grateful for the treatment I have received. After the last 4 years of intensive surgeries, I am back into treatment with heavy antivirals and antibiotics. If I don’t do this, I will become weaker and weaker as the CMV and co-infections ravish my body. If I don’t take the treatment, I will not sustain the work I love to do, accomplish my goals, ride my horses, be a good partner. I have people and animals that depend on me. More importantly, there are people out there that have no life and no voice.
If the strength and experience I’ve acquired through this unusual and unique medical treatment gives me a voice to speak for the millions that can’t scream, so be it. I hear so many silent echoes, it's heartbreaking and truly disturbing. I cannot fathom why intelligent people would have such wanton disregard for those who have served their country honorably and those other citizens they protected.
With years of research, study and suffering coming to an end, I can now finally consolidate my thoughts on everything I’ve learned into a plan for doctors, patients and families of those who have suffered so much. What I’ve come to realize is that there has never been anyone who can bring together what is known and suspected in the links between PTSD, GWI, CFS and all the other precursor illnesses. My long history with the military and the private sector has given me a unique insight into this range of illnesses that impact millions of people. I intend to combines those insights with my deep experience of politics and fundraising to make a real difference.
I know the next steps will not be easy but I am determined.
THE CFS MANIFESTO
Create a 501 C(3) to bring awareness for CFS/CFIDS and to fund small “Revolving Creative Pilot Studies” in order to fast track major medical treatment protocols. Track Suicide data across CFS/PTSD/GWI/Military/Veterans.
Create a 501 C(4) and a PAC to take political action on behalf of CFS/CFIDS in order to accomplish the following.
A PAC specifically designed to help the military and veterans in the context of PTSD, GWI and TBI. I have a long background in PACs and know how powerful they can be.
The vision of this project is simple and focuses on the goal that is shared between anyone who works with CFS sufferers: Aid the sick.
To understand the causes and effects of CFS and find a treatment that will bring good health and save the lives of millions of veterans and others. To explore the causes of suicide amongst these diseases with the goal of cutting the rates generation by generation.
Raise $100 million per year for research of CFS/ME and CFIDS.
Bring together multiple medical disciplines under one foundation.
Create a Dream Center In-Patient/Out-Patient State of the art medical treatment center for patients, like that Montoya discussed, bringing together many different specialists for one shared purpose.
Create a data system tracking patient precursors, age, date of onset, what therapies work, location of contraction, etc. Start graphing in order to recognize patterns for discovery and treatment.
Fund research into PTSD, TBI etc. to understand causes and effects.
Share research to understand the causes, effects and treatments for CFS.
Share the knowledge with the victims and their families.
Develop political momentum for federal support and funding.
Use success to encourage federal bureaucracies (VA, NIH, CDI) to accept new treatments.
Evangelize success globally to positively impact the lives of tens of millions.
Define known and suspected precursors of CFS:
Flus (H1N1, etc.)
MCS (Multiple Chemical Sensitivities)
Medical Action Steps:
CFS-- Institute Prophylactic Measures
Head injuries- Monitor yearly after a head Injury. If signs of CFS appear-check for viruses and bacterial Infection
Mononucleosis- Change the way we treat Mononucleosis. Develop a system to monitor Mono patients; perhaps a regimen of Anti-Virals for six months at onset. Do studies on Mono patients starting in the teenage years when contracted.
Q Fever- Check every six months after infection. Monitor for symptoms and test blood for reactivation of viruses and bacterial infection.
Flus- Anyone that contracts a serious flu with severe infection- monitor every six months for symptoms and viruses and bacterial infections.
MCS- anyone exposed to farm chemicals, aerial pesticide spraying, warfare-check PON1 and monitor every six months for symptomology and test for viral and bacterial infections.
Approximately 75% of CFS patients have Viral and bacterial infections. This subset is known as CFIDS. Test all CFS patients to see what group they are in. CFS (non-infectious disease) or CFIDS.
Approximately 25% of CFS patients do not have viral or bacterial infections. This subset needs to have their thyroid checked (as does everyone with fatigue, sleep issues, cognitive issues, weight gain or loss, headaches, short fifth digit). Many thyroid patients will have normal test values. Thyroid disease is hereditary. If your tests are normal but you have symptoms, three things must be done:
familial history and
blood tests beyond just the TSH must be done
Many patients slip through the cracks and are left undiagnosed because although they are symptomatic for thyroid disease- their doctor does a TSH which shows normal values. A person can have thyroid disease and be very sick, yet their TSH can be within normal range. End stage Thyroid can cause schizophrenia and coma in some patients. The thyroid is very important and unfortunately the field of Endocrinology is an absolute mess; with infighting over the prescription of T3/T4 combination meds.
This subset needs to be monitored for Lyme disease. Lyme Disease patients can have CFS and some CFS patients may have Lyme disease.
STD’s- HSV-1 and HSV-2 patients need to be monitored. Right now, patients are treated only during “break outs”. HSV levels need to be treated when viral titers exceed “high” values, with antivirals to bring titers to an acceptable low range.
We cannot ignore bacterial infections any longer. CFIDS patients will not respond fully to antiviral treatment without also treating at the same time their bacterial infections, if present. Long term antibiotic use is necessary to bring down bacterial infection levels.
33% of breast cancer patients contract CFS after treatment. Educate and monitor all women who go through breast cancer treatment for CFS.
Early treatment is key to successful recovery from CFS. If we can use any and all prophylactic measures, we can reduce full blown CFIDS cases.
Develop a state of the art treatment center for those suffering from GWI
Multiple psychiatric medications are prescribed for GWI sufferers that routinely cause adverse side effects. None of these medications have been studied for their effectiveness in treating GWI and this research is needed urgently.
Start testing for PON1 in symptomatic patients.
Test for bacterial & viral infections as a secondary disease.
Treatment for respiratory problems and a specific understanding of the causation.
Check for PON1.
Test for Viral & Bacterial Infections depending on symptomology.
Check for MTBI and/or TBI.
It is important to listen to the patient and check for any biological issues prior to administering any type of psychiatric medicines.
Veterans need to be treated amongst veterans, not civilians. Outdoor therapies involving talking amongst peers, involving animals, sports and family seems to be working. Support places like LZ Grace and Foundations that are getting our men and women to the right program fit.
Small pilot studies to explore what percentage of PTSD patients, if any, have viral or bacterial infections; MCS- developed from malaria meds, Mefloquine, etc.; brain injuries.
Data collection with all documented research, then put into graph form to search for patterns.
State of the art PTSD research center.
$1 billion State of the Art Tissue Repository with full autopsy staff with multi-disciplinary research Teams (For Suicides in CFS, GWI, PTSD, military & veteran).
Create a system for registry of past suicides to present, keeping current on the most recent developments.
Bring awareness about the tissue repository.
We need to look at the blood and tissue of all suicides in the military & veterans. Only then, will an answer be discovered and help can be developed.
We need an accurate database of veteran and military suicides the prescription drugs they were taking and the effectiveness of those drugs as well as their side effects.
PTSD Prophylactic Measures
At onset of suicidal behavior- check for: viral & bacterial infections; TBI or past head trauma, MCS or medication reaction.
State of the art substance abuse treatment center for military & veterans only. This would be primarily staffed and run by military & veterans. This would also include work against substance abuse as alcohol and drugs as well as the wrong psych medications can induce a spur of the moment suicidal behavior.
Final Medical Action Steps:
Privatize the GWI, PTSD & CFS Industries. Get these illnesses away from the VA and VBA. Many of the best and brightest military doctors go into private practice once they are finished with their deployments. Get these best and brightest to remain working with military and veterans via centers run by the private sector but employing and serviced by ex-military. Keep this project within the military to create jobs there.
This journey of mine opened my eyes to so many other stories of sufferers throughout the world, and knowing what I do now, I know it is my duty to help them. My goal with these hours of research, time spent asking the tough questions and consolidating my thoughts is more than a way to lay out my plan and recount my story; it is my chance to reach the sufferers who have not yet been shown the way.
And now that you know my story and that of my son, understand the illnesses and have a glimpse of possible causes, I encourage you to become your own advocate as well. As one we will push for a world that better understands Gulf War Illness, Post Traumatic Stress Disorder and knows the name chronic fatigue as viruses that can strike at any time. Though my words will end here, know that my work will not cease until there is not one patient of PTSD, GWI, CFS/ME or CFIDS suffering in silence.
This journey has also taught me that I truly am not alone. There are millions of you out there in every country and each with your own story of heartbreak and suffering. As I go forward, I want to march together as one and to help in that process, I’m hoping you can share your stories with me so that I can tell your story as well. You can contact me through my blog https://vlgonvalcyte.wordpress.com Please get in touch; I would love to hear from you.
This is Julia Hugo Rachael. Thank you for coming on this journey with me. Let us all work together to end the scourge of CFS. With your help, we can shine a bright light into the darkness and help find a cure for the millions who suffer from this terrible illness.
One woman’s journey into medical hell and the lessons that will help cure millions.