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The Long Road: CFS novel author returns to 'health'
Tuesday 5 April 2011
The Long Road: "Chronic Fatigue Syndrome: A Novel" Author Returns to 'Health'
Caroline Anderson's gripping novel "A Chronic Fatigue Syndrome Novel" portrays a small community's fight for health (and justice) in the face of a mysterious disorder. When the lead character goes searching for answers she stumbles into a shadowy and even, at times, dangerous world of tainted government agencies and big corporations doing what they need to do to ensure their bottom line is met.
Caroline herself has been looking for answers for decades and her fight, fraught with misdiagnosis, confusion and even doctor neglect, has been every bit as tumultuous. Unlike many people with ME/CFS, however, it does have a happy ending and such provides Unlike many people with ME/CFS, however, it does have a happy ending and such provides hope.
It is also a fascinating story about a confusing illness that skirts the boundaries between diseases putting the patient in a kind of medical limbo and a tale of how a patient bucked the traditional medical system and was greatly rewarded by doing so. Would that all stories turned out this way.
A Long and Winding Road - Caroline now believes she has had ME/CFS for many years but that would notion would come as a shock to many of her doctors over the years. Her health troubles started early with a diagnosis of rheumatoid arthritis (RA) at eight years of age. In some ways it's not surprising RA could be mistaken for CFS. RA is, after all, not a particularly easy disease to diagnose, fatigue is common and her rheumatoid factor was high but she would never exhibit some of the more obvious signs of RA. Doctors would remark, decades later, on what great shape she was for an RA patient - no swollen hands... no joint disfiguration...
It's interesting that the onset of rheumatoid arthritis, fibromyalgia and ME/CFS are sometimes associated with stressful events (infection, trauma, etc.) and Caroline noted that stressful events could set her back even when she was healthy "My parents tell me that every time I had a stressful situation, afterward I would sleep forever. I was a musician and after a performance or concert I would sleep for days, they said."
A Switch Goes On - Still she was for all intents and purposes healthy. During her second pregnancy, however, she developed restless leg syndrome (in retrospect a clear suggestion she might fit in the FM/CFS spectrum), which disturbed her sleep and impaired her ability to relax and heal.
"I distinctly remember in my third month of pregnancy with my second child I developed restless leg syndrome and at the same time stopped being able to sleep soundly. For the next eight to 10 years I never had refreshing sleep. I always said I didn't have an off switch. During that time I was healthy in every other way and I ran,did weight lifting, played tennis, etc. on a regular basis."
And Then Goes Off - But following a series of stressful events it was almost as if an overloaded circuit broke and her health shifted suddenly and dramatically.
"After a couple of particularly stressful events I remember the exact day I fell asleep reading a book. I woke up amazed that the sleep was so deep. Little did I know I would be sleeping the next 10 or so years non stop".
It was if a dike broke and her health cascaded downwards.
"I became sicker and sicker so that I barely could get out of bed after that. I would wake up to feed the horses and go right back to bed. Some days it was all I could do to feed the animals. My children were older during this time and did a lot of the chores. They didn't like it one bit. :)
Through it all she was still able to work from home. ?It was a huge struggle. They cut my pay but didn't fire me, although it was close. The Family Leave Act is probably what saved my job as did the fact that I had worked for the company a long while during healthy times and they saw the difference.
Like many people with CFS she had her better days and her worse days?
"A lot of the years of sickness is a blur. A bad spell would pass and I would run around trying to do all the chores, etc. I hadn't done during the bad spell and then it was back to bed. That happened a lot. A lot, a lot."
Two of her last five years bedbound at times and she was plagued by some bizarre and troubling symptoms.
"I would be lying there and my whole body would flip up into the air". An EEG with a strobe sent her into a seizure. MRI's showed significant brain lesions indicating some demyelination had occurred (yet she did not have MS). She was twice diagnosed with spinal viral meningitis and once was hospitalized. Her blood pressure was up and she?d been on antidepressants for years.
Decades of Mis-diagnosis - Pay Off? - All through it her symptoms were believed to be due to rheumatoid arthritis (RA) and viral meningitis. The RA diagnosis turned out to be a double edged sword; while it turned out to be inaccurate it did legitimize her in the eyes of the medical world - allowing her to afford MRI?s and pathogen and other tests that would have been difficult with a diagnosis of CFS diagnosis. She noted "if you get diagnosed with CFS you're screwed because they won't pay for anything but I was able to get MRI?s and the virus tests? In fact, to this day she's never been formally diagnosed with CFS.
Her rheumatologist wondered why a drug was helping her - and that pushed Caroline to do some digging. Carol knew she had two viruses - CMV and Epstein-Barr and found research indicating it was being used to treat a cytomegalovirus, another herpes virus.
It turned out that her titers to two herpesviruses were high.
A viral trigger for RA has been proposed for many years and, Epstein-Barr virus, HHV-6 and parvovirus B-19, interestingly enough, are all candidates. RA patients often have increased antibody titers to EBV, increased levels of EBV infected B-cells, very high EBV DNA loads in their PBMC's, impaired EBV specific T-cell function, etc. In fact there is a good deal more evidence implicating EBV in RA than in ME/CFS but researchers are unsure if EBV activation causes RA or if it is caused by it or the other autoimmune disorders it appears reactivated in such as Sjogren's Syndrome and lupus
Caroline's rheumatologist had no interest trying antivirals out on her but she thought otherwise. She said "I thought, maybe it is a virus problem and I flew down to Florida to see Dr. Dantini who'd written a book about curing fibromyalgia with antivirals. He sees fibromyalgia and CFS as two sides of the same coin, one is the pain side and the other side more cognitive and fatigue. He also believes that rheumatoid arthritis and almost all autoimmune disease will be viral in the long run".
She started Famvir (famciclovir) - 500 mgs/3 x's day in April, 2010 and is still on it. (Dr. Dantini also uses to fight valacyclovir (Valtrex) to fight herpes viruses and sometimes valganciclovir (Valcyte) and ganciclovir (Cytovene). Early on it was tough "the very first thing that happened was that I got so much worse that I couldn't get out of bed for a week? She hung in there and once that was past she had a very, very quick response to the drug stating she quickly began to feel like a new person. It wasn't six weeks and I was so changed that people were like 'what happened to you'?" The difference for her has been 'night and day'.
When I noted my tendency to have emotional /physical reactions to the littlest things she noted that that her oversensitivity to events had just dropped away. ..and she was no longer on antidepressants. "From the time I started taking the antivirals I just gradually stopped taking them and stopped taking them and forgot to take them (laughs) and now I don't take them".
Her symptoms have largely disappeared and her blood pressure is back to normal as well. She's not completely well; if she works too hard or gets emotionally upset - she'll have a setback - but her definition of "working too hard" has changed dramatically. She said she just went through a period in which she worked 12-15 hours a day for two weeks (and then she did crash - but who wouldn't).
Careful About Exercise - She's being very careful about physical exercise. "I have not tried running since going on antivirals. However the first thing I did when I started feeling better was to go lease a horse. I can ride horses as long as it doesn't step over the threshold into anaerobic and I can do heavy lifting and shoveling like cleaning stalls.
Caroline had an amazingly speedy response - many people on antivirals take up to a year to really see results but she wasn't only taking Valganciclovir, however, in Caroline's twisted journey through the American medical system she had picked up an unusual drug - methotrexate - that is rarely prescribed for people with ME/CFS.
A Piece to Her Puzzle? - Caroline began taking methotrexate for her 'rheumatoid arthritis' in June 2005 and it remains a key part of her treatment protocol. Methotrexate is a powerful enough chemotherapeutic drug for her doctor to call it 'skull and cross-bones' medicine because of it's ability to 'take out anything'. It can have significant side effects but she improved significantly on the small doses she was taking.
She said "When I started the methotrexate I was much more functional and while I wasn't setting the world on fire, I wasn't close to being fired anymore either. If I don't take it I go significantly downhill. The methotrexate brought me into the world of the living and the viral medicine put me over the top into being a healthy, normal human again? which brings up the question could some people who are not responding particularly well to antivirals missing a key ingredient?- methotrexate?
We recently heard about methotrexate in conjunction with the Swedish Rituximab trial. Carol tried Rituximab for her 'rheumatoid arthritis' and had fared poorly on it associating it with significant cognitive declines she experienced while on the drug. She called the drug 'bad news' and said "I've never been the same since".)
Methotrexate targets rapidly dividing cells which may be why it's been used to turn down the over-reactive immune response in autoimmune disorders. Low doses of methotrexate have been shown to be very effective in managing (not curing) rheumatoid arthritis, Crohn's disease, and psoriasis. In these disease methotrexates inhibition of the enzymes involved in purine metabolism appear to play a role. This causes adenosine to accumulate and which inhibits IL-2 expression - suppressing T-cell activation and turning down the immune response.
Interestingly, most of the interest around methotrexate and herpesviruses revolves around whether it might increase viral loads and several cases of EBV lymphoproliferative disorders have been linked with methotrexate therapy. Several studies, have suggested, however, that methotrexate does not result in herpesvirus activation.
New School - After her many years of misdiagnosis Carol is now surrounded with antiviral friendly physicians. Her DC physician Dr Joel Ang , a family practitioner, HIV specialis. http://www.qstreetmds.com/ also believes in antivirals. She noted that he treated a woman with fibromyalgia who was bedridden for two years and is able to get up and around now. She reported that Dr. Ang believes that within five years antivirals will be standard treatment for these disorders.
The Ghosts of Viruses Past - We did miss one surprising turn in Caroline's journey. According to most medical professionals she shouldn?t have been taking antivirals at all. In fact, the vast majority of them never would have prescribed them to her. Her high antibody titers were to 'memory' or IgG antibodies?-(what she called the 'ghosts of viruses past'? ) not the antibodies believed to indicate an active infection?You would be very hard put to find a doctor who would put you on antivirals because of these tests.
Times may be (slowly) changing, though. These are precisely the antibodies Dr. Montoya is looking at in ME/CFS. From the CNID Website
IgG antibodies to the viral capsid antigen develop 2 to 4 weeks after onset of the initial infection and then persist for years, at gradually declining levels. Drs. Montoya and Kogelnik at Stanford have found that patients with elevated antibodies to VCA IgG and HHV-6 antibodies respond to antivirals, and the VCA titers dropped significantly with treatment, suggesting that elevated VCA titers represent active infection.
This test is not definitive because many healthy adults can have high antibodies as well but they believe that a high titer in a 45 year old means something very different from a high titer in a 20 year old.
Old School - When Caroline showed up - nearly well - at her rheumatologists office that disconnect was too much for her Dr. to take. Faced with a logical impasse, instead of congratulating Caroline on her return to health and trying to incorporate this seemingly paradoxical information into her understanding, Caroline's doctor reacted angrily.
"She stated that I didn't understand what I was reading and there wasn't any possible way for me to understand since I don't have the training to understand the research it was horrible. I finally told her you do your patients an injustice by not thinking about this?"
Although it took her decades to find the right doctor Caroline was lucky in how quickly she responded to antivirals. The fact that her high Rheumatoid Factor reading has returned to normal after decades of being high suggests that viruses were behind her health troubles from the beginning. Her body was probably able to keep them mostly under control but her second pregnancy cracked open the door and a combination of stress and sleep problems appears to have blown it open throwing her into an amazing downwards spiral that concluded in several attacks of spinal meningitis, brain lesions and her full body spasms.
Perhaps most astonishing was her ability to quickly return to mostly normal health using antivirals. Many people with ME/CFS either don't have the opportunity to try antivirals or don't respond as quickly if they do but Caroline presents a tantalizing case of why this avenue of research and treatment needs much, much more attention.
The Dark, DARK side of Medicine
At one point in the book Caroline described a horrifying process some insurance companies used to deny claims. I fervently hoped it was fictional but it wasn't. She reported that a ruling (which UNUM is appealing) a Judge found that UNUM changed their claims units into 'profit centers' and that employees are paid according to their effectiveness at denying claim and that people with CFS, GWS, FM are denied the most often. She said 6% of UNUM's claims at one point were due to people with CFS, GWS and FM type patients and it's down to less 1%. That's the result of giving their employees interest in not accepting these claims - to find any way they can to wiggle out of them.
"There is a vicious circle at work here; insurance companies won't pay for many patient's tests - which means they have to come up with their own money to document their disorders. Many, of course, cannot -making it difficult for them to get the viral tests or MRI's needed to document their disability or provide proof for their antivirals. Here is where the inability to come up with a biomarker comes in?No biomarker means a problematic diagnosis and a big wedge the insurance companies can use to manipulate claims.
Insurance companies pay people to go to medical conferences and talk about the rising psychological aspects of CFS. I wondered about the low rate of funding at the CDC. Their own papers show high prevalence rates and high economic costs from CFS - yet the funding remains pitiful. One has the sense they're throwing as little money at the disease as they can get away with. She didn't know why CFS funding was due to an entrenched bureacracy that just didn't care or if something else was going on but she did try to get disclosure papers for Dr. Reeves and failed. It wasn't due to a coverup at Reeves level; there's apparently a systemic problem with doing disclosure at the CDC - something Senator Grassley is investigating.
The lack of disclosure goes further than that in the federal government. The federal government is supposed to do disclosure on the members of different committees but it's all kept internal - they are not open to the public. (The only way she got Michael Sharpe?s disclosures was because he worked for the American Psychiatric Association and they require disclosure! If not for that, there would be no information.)
The book suggests that there are researchers that have more to gain from having ME/CFS being labeled as a psychological disorder than personal prestige. Besides the obvious desire to be proved right and the financial benefits that accrue from that, I asked her if there are researchers who derive direct financial benefits from ME/CFS being seen in this way?
She reported that Michael Sharpe, one of the primary authors of the 1994 Fukuda Definition, has been paid by insurance companies on three continents. She said 'Was he involved in that in 1994? I don't know the answer to that - all I know is that today he's involved in UNUM (the largest disability company in the world) and that he's been used as an expert witness against CFS patients by law firms across the UK?. (You can see the disclosure forms on Michael Sharpe on Carolines website).
Simon Wessely was not a co-author but he is cited five times in the 1994 definition. He get's funding from these charitable foundations but these aren't your ordinary charitable foundations; these charities are getting their money from a string of psychiatric hospitals in the UK.
Simon Wessely has also has worked with UNUM and wrote a report stating that doctors colluded with patients and made up information to get people to have disability.
The above, with comments, originally appeared here.
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