One woman’s journey into medical hell and the lessons that will help cure millions

By: Julia Hugo Rachel

Copyright Julia Hugo Rachel 2016


One woman’s journey into medical hell and the lessons that will help cure millions.

September 11, 2001 was a day of infamy for millions of Americans. For me it was the start of a very personal war against terrorism. I had been around special forces and the intelligence community for years, more by accident than design. I knew what a threat looked like and had played a modest part in the wars on terrorism and drugs.

I had been raised mostly in LA where my father was a politician and lawyer, a local mover and shaker among the power elites of that city. Inevitably, I rebelled in my teens and found myself living with an offbeat community in Northern California among a bunch of current and ex-special forces. I liked their esprit, their can-do approach to life and their belief in God and Country. This led so many of them to put their lives on the line day after day and year after year in secret wars of which the American public were largely unaware. I had lost friends and had learned how to kill and from time to time had feared death myself.

None of this was particularly unusual for anyone close to the military or intelligence and post-9/11, I felt like many Americans that my duty was to do whatever I could to defend my country from enemies both foreign and domestic. When I moved north to be with my aunt who had relocated to Northern California, I had little idea that I would end up much closer to the front line than I expected.

Northern California and Southern Oregon are in many ways an American time warp: far away from the big cities of San Francisco to the south and Portland to the north, the region is an oasis of backwoods folk whose families pioneered the region generations ago and the more recent New Age newcomers who grow marijuana and smoke it in equal measure and believe in spiritual reinvention.

I moved to Shasta County south of the Oregon border where the nearest “big city” is Ashland, a town of 20,000 and home of the Oregon Shakespeare Festival which draws 200,000 visitors a year to the plays and beauty of the surrounding Rogue Valley.  In recent years, Ashland has acted as a magnet to professionals and aging hippies who find the city’s tolerant culture and acceptance of every fringe medical and spiritual practice attractive.

Inevitably, the city had its fair share of scam artists but it had never really appeared on any law enforcement radar. Then, in 1999, a charity funded by Saudi Arabia called al-Haramain came up on the watch lists at both the National Security Agency and the Central Intelligence Agency. The year before, the Kenyan government had banned the charity claiming it had been involved in the bombing of the US embassy in Nairobi that year. Then Russia’s Federal Security Service accused the charity of wiring $1m to Chechen rebels, who Russia viewed as terrorists.

Once NSA and the CIA began their work after the Kenya Embassy bombing, it became clear that al-Haramain was a major supporter of Al Qaeda, the Chechens and other Moslem terrorist organizations, all behind the cover of humanitarian work in the Middle East and Africa. One of the tentacles of the charity led the intelligence community to the sleepy backwater of Ashland where al-Haramain had established a chapter. It was an unlikely location and its founder made an equally unlikely terrorist financier.

Pete Seda had been born Pirouz Sedaghaty in Iran, had fled the country in the 1970s before the Revolution that overthrew the Shah and had become a US citizen in 1994. In Ashland, he had a reputation as a jovial character and devout Moslem who would parade his camel in the city’s Fourth of July parade. He made his living as an arborist and blended perfectly with the city’s environmentalist and fringe figures.

But NSA intercepts revealed a different man who was much more worrying. In 2000, the Ashland branch of Al-Haramain had received a donation of $150,000 from an Egyptian businessman who made clear that he expected the money to find its way to Chechen rebels. The cash was exchanged for traveller’s checks and the Ashland branch Treasurer, Soliman al-Buthe, personally carried the checks to Saudi Arabia for passing on to the Chechen rebels. In his later tax return, Seda claimed the money had been used to buy a building in Missouri.

In 2002, al-Haramain money financed two attacks in Kenya, one a bomb at a Mombasa hotel popular with Israelis and the second a missile strike at an airliner which missed its target. The bombing killed 13 people and injured 80 others.

The law enforcement wheels may turn slowly but they got there in the end and the FBI and the IRS raided the offices of al-Haramain in Ashland and Pete Seda’s home taking away 60 boxes of possible evidence. The following year, the US Treasury made both al-Haramain and the Ashland branch Treasurer ,al-Buthe, a Specially Designated Global Terrorist (SDGT) and a federal grand jury indicted both al-Buthe and Seda on tax charges. The two men fled the country and Seda ended up in Dubai.

Seda voluntarily returned to the US in 2007, was tried in 2010 and convicted of tax fraud and criminal conspiracy and sentenced to 33 months in jail. The conviction was later overturned on appeal after the court found the government had concealed evidence, failed to reveal that it had relied on a paid informant for some evidence and had unfairly linked a tax case to terrorism.

I landed in the geographic area after Seda had been arrested but while the al-Haramain links in the community remained strong. 

It seemed to me that I had found myself in the middle of an area network that was funding extremism and might, in fact, be infiltrating extremists into the American homeland, something I knew was of prime concern to both the CIA and the FBI.

I saw some of the Islamic sponsored students graduate and join the military and others with whom we had links go straight into units like the 75th Rangers and the 82nd Airborne, both of which supported the SEALs in special operations, so I become concerned that we were letting our enemy into our midst and there would be terrible consequences.

I passed on what I learned to different parts of the military and intelligence communities hoping that action would follow. But, like so much of the white noise after 9/11, nobody seemed to care. This was a time when we were killing the leaders of Al Qaeda and ISIS with drone strikes and our footprint on the ground was being slowly withdrawn as the President sought to reduce the casualties in foreign fields.

Then, on May 2, 2011, in a CIA-led operation in Abbottabad, Pakistan, SEAL Team 6 attacked a compound where Bin Laden was hiding and killed him and a number of his followers. The raid, codenamed Operation Neptune Spear, was the result of nearly ten years of stitching together fragmentary intelligence to finally track down the man responsible for 9.11 and multiple other atrocities.

Four days after the killing, Al Qaeda promised revenge against America and SEAL Team 6. Intelligence gathered from the many hard discs and files recovered from Bin Laden’s hideout revealed that many operations were already active. Some were stopped and others continue today. 

From my perspective thousands of miles away, I did not rejoice at the death of a man who I saw as the personification of evil because I knew the war that lay ahead would continue to be really tough and perhaps last for generations. But what concerned me was the increase in activity among the Moslems who were part of the network on US soil. I continued to pass along what I learned and it was quite clear to me that some of the group was being placed inside the military from where they could do terrible damage. But, however loudly I shouted, my voice was lost in the noise.

Then, on August 6, just four months after Bin Laden’s death, I got the tragic news that a Chinook helicopter had been shot down in Afghanistan with the loss of 30 lives, including 17 members of SEAL Team 6 and five special warfare development group operators and a special ops K9. It was the worst one-day loss in the history of US naval special operations.

The aircraft – call sign Extortion 17 – had been hit by a rocket propelled grenade in an attack known in the military as a ‘golden BB’, the one in a million shot. An RPG is extraordinarily inaccurate and the idea that an RPG could hit a helicopter is almost unthinkable.

I’ve lost friends in the US Special forces and I knew some of the guys who went down that day. As the news came in, I felt sick with shock and the pain I felt for the men and their families. Behind all that was the feeling that perhaps if I had shouted louder, I might have been able to save their lives.

The more I looked into the ambush, the stranger it seemed. The cargo helicopter flew into a well-known hostile area, into a valley where the Taliban seemed to have prepared for their arrival with men along the hillside on either side of the valley. At the very least, it was a poorly planned mission with the wrong type of helicopter instead of the well armored and better equipped special forces helicopters used routinely by SEAL Team 6. For families of the dead, there was ample fuel for a conspiracy: the helicopter’s black box was never recovered, the after action investigation left questions unanswered. Critically, nobody could explain clearly just why a lumbering Chinook had been sent into a hot landing zone where a firefight had already been underway for three hours. Then, why the giant Chinook slowed to 58mph just 150 feet above the ground within easy range of the waiting Taliban fighters lining the valley. Was it all just the fog of war and the heat of battle? 

But, military commanders told the after action investigation that Taliban commanders had put 100 fighters into the very Valley where the Chinook was shot down with specific orders to take out a US aircraft. Then, as the Chinook approached, a group of Taliban fighters equipped with hand held radios and monitored by allied forces, shifted position and gathered around Extortion 17’s landing zone which had never been used before.

Finally, there were seven Afghans on board whose names have never been revealed as the published manifest used pseudonyms for all of them. Exactly why the disguise was necessary and just who the Afghans were has never been revealed. But for some of the families, the inconsistencies point to a betrayal and to command failure.

For me, this whole terrible affair felt deeply personal. I felt the loss as if it was my own family, not least because I am convinced that if I had done more by exposing the network that I knew about, those lives might not have been lost.

I have been around long enough to know that intelligence is a tough world where one tiny mistake can cost thousands of lives, where the terrorist only has to succeed once while we have to win every time. I felt nothing would be achieved by taking my concerns to anyone further up the chain than the people I had sent my intelligence to. 

As I spoke to families of the dead and friends who were still serving, I began to feel a stirring of the passion I have always felt around the innocent victims. The work I do is not so much to get the bad guys – although that is certainly important – I’m much more concerned with the recurring nightmares I have around the dead, the dying and the maimed that are always the victims.

In thinking about it, I realized just why this all felt so personal. While I had suffered nothing like those grieving families, I had undergone my own struggles. Some years earlier I had been diagnosed with Chronic Fatigue Immune Dysfunction (CFIDS).

According to the National CFIDS Foundation, the disease is diagnosed as “a disabling condition often affecting the central nervous system, brain, blood, muscles, joints, GI tract and lymph system. Symptoms include disabling fatigue which is not significantly helped by rest, orthostatic intolerance (inability to stand for periods of time), muscle weakness and pain, joint pain, sleep disturbances and un-refreshing sleep, cognitive problems including memory loss and difficulty concentrating, gastro-intestinal problems, headache, fevers and swollen lymph nodes.”

For me this translated to years of pain, both mental and physical during which my mother took my son, Blake, away from me claiming I was mentally and physically incapable. A succession of doctors told me that the illness was incurable and that I was either going to get better or die and the outcome was in God’s hands. 

Blake became ill with exactly the same illness, an unusual circumstance when a psychological illness impacts two people in the same family.  When I told doctors that Blake’s character and mood had changed dramatically, they sent him for a psychological exam and prescribed him anti depressants. But nothing he was given seemed to work and 100 specialists and a quarter of a million dollars later, his doctor was urging me to put him in a hospice program and prepare for his death.

By this time, Blake had gone from 6’2” to 6.0”, his shoe size had shrunk from a size 14 to size 11 and he had gone from 186 lbs to 135. He had been bedridden on and off for 6 years and he experienced profound and debilitating fatigue with un-refreshing sleep, migraines, sensitivity to light, severe night sweats, ringing in the ears, vertigo, severe Orthostatic Intolerance, muscle weakness, joint aches, severe heat intolerance, panic attacks, anxiety attacks, withdrawn behavior, depression, suicidal tendencies, near complete cognitive decline (he was put at 1% of physical and cognitive abilities.) 

One sunny day as I was heading out to the horse pasture, I looked  in Blake’s window  and  saw him with a loaded shotgun in his mouth. He was sitting on his bed with a  glazed and blank expression on his face. It took me a split second to figure out that I couldn’t run fast enough to get to him through the back door of our house before he pulled the trigger. In the next second, I was tearing  at  a screen and hurling myself  through  a  4×6 ft.  double paned window.  At that point in time, nothing mattered to me except getting that gun out of his mouth. I got there in time but I never want to again confront the reality of my son being so tired of life that he wants to end it prematurely with a gunshot to the head.

As I held him in my arms that day with the tears coursing down my cheeks and the sobs wracking my body, I swore to myself that I would take my life and Blake’s back. No longer would I listen to the endless stream of doctors telling me that nothing could be done. Instead, I would do something – anything – to take control of our lives and find a cure for this debilitating, agonizing and destructive illness.

As I had gone from doctor to doctor and specialist to specialist, I had learned to speak a different language full of jargon and acronyms that I had taught myself to understand. The doctors with a military background talked Post Traumatic Street Disorder (PTSD) and Gulf War Illness (GWI). The civilians talked of CFIDS or Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME). What I was beginning to appreciate was that these acronyms were all buckets into which an unknowing medical profession would throw all the things they didn’t understand. Far easier to diagnose an acronym than admit ignorance, especially an acronym that came with the diagnosis of mental illness.

I had one final lead to pursue, a doctor in Los Angeles who was rumored to have found a cure using a drug that is normally given to transplant patients. I piled Blake into my car and drove 20 hours through the night to the doctor’s surgery where I camped until he agreed to see me. It was a Hail Mary pass and the fact that I’m alive and that Blake is currently planning to join the military is testimony that there is hope.

As I sat thinking about the misery of those families who grieved the loss of husbands, fathers and sons in that helicopter tragedy in Afghanistan, I realized that there was something I could do that would make up for the guilt and shame I felt over the loss.

I had met dozens of vets who suffer from PTSD or GWI, many of them with exactly the same symptoms I had. I knew wives, sons and daughter who were all despairing of ever seeing the man they sent off to war come back home again as the person they once knew and loved. There were tens of thousands of these men and women (250,000+ and counting) who had been consigned to the ash heap of mental history and the dead hand of the Veterans’ Administration. 

There was more to be done and my experience of heartbreak and triumph could act as a foundation for all those who were walking the same path without hope. There is hope and both Blake and I are the living proof.  Some of these patients who have been diagnosed as mentally ill may be actually suffering from a virus or infections that can be treated and cured.

This is my answer to the men and women, both veterans and civilians, who struggle with PTSD, GWI, CFIDS, CFS or ME: There is hope and a cure is possible.

Every time I hear of a veteran who struggles with PTSD or of a friend with CFIDS or of an attempted or successful suicide, my heart fractures just a little more. This is my story that will give comfort and hope to the millions who thought there was none.