Tuesday, December 6, 2016

Turns Out, It's All in Your Head

[Originally published in October 2014)

I had intended to keep this "diary" but have failed to write any posts for weeks, because I simply forgot!  Due to CFIDS "brain fog" I have to write down literally everything in my notebook in order to remind myself to do things.  For example, I must make a note to "pay bills!" even though the bills are clearly visible in front of me, in the inbox on my desk.  At times I get the nagging sensation that I have overlooked something, so I refer to my notebook to find out.  I don't think there is any question that CFIDS has a mental component and it is probably measurable.  I've grown considerably stupider since the onset of my illness, as evidenced by IQ tests.  In childhood I was evaluated, possibly due to concerns about odd behavioral issues (autism spectrum?  nothing was ever diagnosed, as far as I know), but subsequently I was skipped forward two grades and I was not allowed to ever get less than an "A" in school.  When I took an IQ test in my healthy 20s, the result was 147, which I find dubious, because if I'm really so damn smart, why haven't I been more successful in life?!

Be that as it may, when tested again a few years ago (at which time my disease was at least 90% in remission), I got 127, which although is still a pretty high score, is a loss of 20 points.  I sure would love to have those 20 points back, for what good they may have done.  I assume the loss is related to CFIDS, not having any other obvious explanation.  It is true that I had a concussion several years ago when my horse stepped back onto her own very long tail and fell on top of me, knocking me out cold for a few minutes.  However, I am fairly sure the decline of my intelligence preceded that accident.

I suppose I should be reassured by Simon Wessely's claim that, "objective impairment rarely matches the severity of the subjective complaints" of "brain fog" by patients with CFS, or as it is called in Europe, ME = "Myalgic Encephalomyelitis," although presumably IQ test results do constitute "objective" data - right?  I learned about Dr. Wessely recently while catching up on the latest research on CFIDS and read his rather amusing paper from 1997 entitled, "Chronic Fatigue Syndrome, A Practical Guide to Assessment and Management."  I realize that many CFS patients will be quite offended by my use of the word "amusing" in this context, but please keep in mind that I have a wickedly sarcastic sense of humor which unfortunately does not always come across in writing.  I will try to explain later, why I find Dr. Wessely's "research" so humorous.

Admittedly, I've been somewhat "out of the loop" with regard to CFIDS research until recently.  Mainstream medicine had initially proposed, "it's all in your head," "the yuppie flu" or "shirker syndrome," but by the time of my diagnosis in 1992, they had already gotten past that and moved on to serious research by immunologists and infectious disease specialists attempting to identify a viral, toxic or other environmental etiology.  After my disease went into remission in 1997 thanks to herbal/holistic medicine, I largely lost interest in the mainstream approach.  Research continued to advance with regard to viruses, T cells, B cells, cytokines and such, but in my case it was a moot point since the herbal treatment had worked extremely well and fixed the problem.

The next time CFIDS research came to my attention was when my father gave me an article from the Wall Street Journal in 2009 alleging that XMRV had been identified as the viral cause of CFS.  I was skeptical, because several other viruses like EBV had been suggested and later rejected; further verification would be required.  And despite all the excitement over this discovery among CFS sufferers, I found no reason to celebrate the discovery of a viral etiology, since viruses are notoriously difficult to cure or even to treat successfully and antiviral drugs tend to be toxic.

I was not particularly surprised when the XMRV theory was disproved in 2012.  My reaction to the news was, "Oh, well.  Presumably they will keep looking."  What I did not know about at that time, and have only very recently discovered, was the huge and heated controversy surrounding XMRV and CFS!

In the study which was performed by immunologist Judy Mikovits, the CFS samples were ultimately found to have been contaminated by XMRV at the laboratory where they were sent.  For reasons that remain unclear to me, Dr. Mikovits was accused of fraud and arrested, although the laboratory which had made the mistake was not penalized, and meanwhile, CFS patients rallied around her and championed her as their savior.  Why?  Well apparently, much to my surprise, it turns out that Dr. Mikovits was the only person still doing any real research, and it had been privately funded!  The CDC was providing very minimal funding for CFS research and there was also a scandal regarding misappropriated funds that were supposed to go to CFS but were diverted to other CDC programs.  In addition, the failure of the XMRV study was inexplicably interpreted by Wessely, among others, as proof that no viral cause for CFS exists, although nobody has explained why the elimination of this one virus would automatically rule out all other viruses.

In any event, amazingly, it looks like we are now back to square one and CFS is supposedly "mental" or "behavioral" after all, as Wessely had stated in his "Practical Guide" in 1997 and has continued to stand by this opinion subsequent to the XMRV study. According to Wessely, CFS is a sort of voodoo curse caused by "mistaken beliefs" and/or negative thoughts, namely, "This is a serious physical illness," "This is a viral illness," or even, "Patients with this condition require a lot of rest."  Wessely does not provide any evidence to support this theory; he merely assumes it based on lack of definitive proof to the contrary, and then goes on to offer a "treatment" protocol from the behavioral therapy approach.  While he does admit that in some cases CFS may have initially been triggered by a physical cause such as a viral infection, he is convinced that the prolonged symptoms of fatigue and pain which characterize the disease are due to purely behavioral factors, i.e., what used to be called "malingering."  He traces the origin of the disease back to "neurasthenia," a neurotic disorder similar to hysteria, while for some reason brushing aside the fact that the earliest documented cases of CFS/ME were diagnosed as "atypical polio," perhaps because that diagnosis implies a viral agent such as Coxsackie, which would inconveniently contradict his psychiatric model.

Wessely's "treatment" protocol requires that the CFS/ME patient not be tested or treated by specialists in immunology, infectious disease, neurology or rheumatology, as so doing will only substantiate their "mistaken belief" that they have a physical illness.  He states that any data acquired in terms of T cells, B cells, viral titers, neurological abnormalities, etc. - even if accurate! - would be harmful to the patient by way of reinforcing the voodoo curse.  Wessely believes that actual empirical/ laboratory data is irrelevant and ought to be ignored, for no apparent reason other than the simple fact that it is incompatible with his behavioral treatment approach which, as a psychiatrist, is really all he is qualified to offer. Presumably the M.D. immunologists, neurologists and infectious disease specialists who have in the meantime done considerable research demonstrating physical evidence of disease in CFS/ME would be better able to explain this and, in fact, have already done so.

Wessely recommends that while a doctor should avoid reinforcing the patient's incorrect belief about a physical cause of their illness, at the same time he should at least feign sympathy and/or understanding of the patient's belief in order to gain the patient's trust and confidence which is necessary for the success of the psychiatric behavioral therapy.  Amusingly, he cautions against telling the patient, "it's all in your head," because even though [he believes!] this is true, it is better to lie if necessary in order to obtain compliance from the patient in the therapeutic process, for which he apologizes but states that it is "ethical" because it will benefit the patient.  In other words, Jedi mind tricks are an essential component of CFS/ME "treatment."

To his credit, the "CFS treatment" program which Wessely recommends is actually a very practical, common-sense approach that could be useful for any person who suffers deconditioning as a result of being bed-bound for a prolonged period from any illness: namely, a well-planned program of gentle exercise and gradually increasing activity balanced with an appropriate amount of rest, sleep, good nutrition, and positive thinking rather than dwelling on one's illness.  But this approach is hardly original or newsworthy!  Indeed, it has long been recommended by my doctor and probably most other CFS specialists.  So, we CFS patients have already been doing this, and while it probably couldn't hurt (except in extreme cases where even a little exercise can be too much for some patients), we have also found that it doesn't actually cure the condition or significantly alter the physical symptomatology, and therefore is not a "treatment" specific to CFS/ME.

Dr. Wessely seems to think that either we are lying and/or our doctors did not implement the plan correctly.  However, he admits that even when the therapy is conducted according to his specifications, it is not curative.  In his studies, while 20% to 50% of CFS patients improved somewhat in terms of their symptoms, ultimately very few, if any, patients returned to their premorbid state of function.  And interestingly, the single most important prognostic factor was the patients' belief about the nature of their disease:  "Another consistent feature is the patient’s belief in a physical cause of their symptoms, which predicted poor outcome in every study in which it was measured."  Patients who did not attribute their fatigue to a physical or infectious origin were more likely to benefit from the behavioral therapy.  Wessely concludes that it is the patient's incorrect belief which magically perpetuates the physical symptoms including fever, swollen lymph nodes and even laboratory abnormalities and presumably also, (although he completely avoids any discussion of the immune dysfunction component!), chronic or recurrent opportunistic infections.

Now I'm going to go way out on a limb here and suggest another possible explanation for the outcome of the studies, in line with Occam's razor, "the simplest explanation is often correct":  Maybe the patients were right.  Maybe their beliefs about the nature of their illness were correct.  "Chronic fatigue" is a vague term which could have many causes.  It does not seem unreasonable to suppose that those patients whose CFS does, in fact, have a physical origin (such as viral) would be less likely to significantly improve with psychiatric treatment.  Cognitive behavioral therapy would probably have about the same efficacy as it would with any other physical illness.  On the other hand, patients who observe, "Yes, my chronic fatigue was a result of over-work, stress, self neglect and/or insufficient rest," would be the most likely to benefit from the behavioral therapy approach to correct those lifestyle factors.  "Beliefs" do not generally arise in a vacuum, but from experiential data.  Patients are well aware of their own history and the nature and onset of their symptoms, whether it be an acute viral illness or a gradual decline in function from sheer exhaustion.  The results are exactly what we would expect, if the patients' beliefs are accurate.  No voodoo is necessary to explain the outcome.

But, the above is all theoretical.  I would now like to discuss from my own experience as someone who has suffered from CFS/CFIDS/ME off and on since late 1991, how Wessely's model fails to account for my symptomatology.  "Belief" in the opinions of doctors has been somewhat irrelevant to the course of my disease, my remarkable recovery, subsequent relapse, and continued ability to function.

As someone who had always been extremely healthy and active, who rarely if ever got sick even when everyone around me was sick, and if I did, maybe a minor case for a day or two, I did not believe I had anything to fear from physical illness.  I only saw doctors to obtain birth control, and to patch me up after a car wreck in 1988 from which I rebounded very quickly and seemingly recovered completely.  A couple of days after the doctor said I might die and I was rushed to emergent abdominal surgery, the nurses were alarmed to find me doing yoga out on the patio standing on one leg with my other foot above my head.  I believed I would be fine, and so I was, as always.

But, in late summer of 1991 I suffered from an intense flu-like febrile illness that knocked me on my ass, kept me bed-bound for over a week and came back a couple of months later, from which I never really recovered, was constantly and severely exhausted, and subsequently began catching every cold or flu that went around the office and developing recurrent pneumonia, and by the spring of 1992 I was forced to acknowledge that something was wrong.  Because of the sudden immune dysfunction, my first thought (as was my doctor's) was HIV.  When that test came back negative, I was relieved.  When the lengthy list of other rule-outs (such as Lyme disease, thyroid, etc., etc.) also came back negative, my first reaction was, "Great, so I'm fine.  There's nothing wrong with me."  However, the doctor then said, "It appears that you have Chronic Fatigue Syndrome, specifically the immune dysfunction variety."

My response was, "?!  Doc, come on, that's not even a real disease!  It's like the yuppie flu or something, right?!"  My doctor responded gently, with great compassion in his voice, "I'm sorry, but it is indeed a real disease which the media has misrepresented.  Most likely viral in origin, although we have not yet been able to identify the virus."   He discussed the risk factors which had probably contributed:  The near-fatal auto accident a few years prior in which the seatbelt had torn my intestines against my spine, releasing intestinal flora (including Coxsackie virus) into the peritoneum, and persistent lack of sleep due to my being by nature a "night person" and working a stressful 8-to-5 job.  I could go to bed anytime you want, but I could not fall asleep before midnight at the earliest, and had to get up by 6:00 a.m. to get to work on time.  No amount of schedule-changing, pharmacological or behavioral manipulation of any kind was ever able to change this.  My doctor surmised that the job stress and lack of sleep had worn down my immune system to the point where an intestinal Mystery Bug (enterovirus) had managed to bite me hard.  This made sense.

According to Wessely, the "cause" of my CFIDS was the voodoo curse implanted by my doctor when he diagnosed me with "a real disease."  However, it should be noted that my symptoms preceeded the voodoo diagnosis by at least 6 months, making that etiology extremely unlikely unless my doctor had a Tardis and had secretly traveled back in time to curse me.  Wessely would argue, nonetheless, that the subsequent course of my illness was shaped by that voodoo, in addition to agreement by the immunologist and other specialists who concurred with the diagnosis and told me, "You will never work again.  We are going to put you on SSDI."  And they, like my doctor, outlined a plan of gradual gentle exercise balanced by sufficient rest, 10 hours of sleep a night, carefully doing the activities that I enjoy (yoga, dance, surfing, hiking, horseback riding) as much as possible while at the same time, being careful not to overdo it, trying to stay positive, and of course, good nutrition.  (Sound familiar?)

Well, the voodoo didn't "take."  You see, although I believed the doctors' explanation was probably right, I simply didn't care.  It did not matter to me whether the source of my illness was a virus, or whatever.  A lifelong yoga practitioner and believer in mind over matter, I was sure I could overcome this disease.  But as I experimented with pushing the boundaries, it became abundantly clear that their advice about "not overdoing it" and "getting enough rest" was worth heeding.  Being by nature a very active, athletic person, it was at first quite difficult to accept any limitations until my experiments repeatedly validated their recommendations, resulting in overwhelming fatigue and muscle pain, often along with "opportunistic infections," which could only be improved by a couple of days in bed.  So I gradually learned to pace myself, and while my energy level did improve over time, it never returned to anywhere near my premorbid state of function.  All the mainstream doctors could do was give me antibiotics for the frequent infections, and Tylenol No. 3 for the pain.  The latter was extremely valuable in helping me to get enough sleep and to feel halfway normal; the degree of exhaustion caused by chronic pain is often underestimated by those who have not experienced it.

By the time the DEA changed the rules a few years later so that younger patients with chronic pain could no longer qualify for narcotics, my initial enthusiasm for mainstream medicine (in which I was now employed, contrary to the voodoo pronouncement!) had begun to wane significantly and I was ready to explore other alternatives.  Like many scientifically-minded people, I was very skeptical and had always believed, "If holistic stuff like herbs actually worked, doctors would be prescribing them!"  However, at this point I had nothing to lose by further investigation.  A midwife herbalist friend assisted in my experiments, the first of which was to make my own herbal pain medication, which turned out to be quite effective.  Encouraged, I consulted with other holistic experts and eventually found a combination of immune-enhancing herbs which worked so well that by late 1997, to the considerable amazement of my mainstream doctors, my disease was at least 80% to 90% in remission.  The pain was less, my energy level had improved significantly, and I had far fewer infections.

Provided that I continued to get about 10 hours of sleep a night, and didn't "overdo it," I could live almost a normal life, working as a medical transcriptionist as well as a telephone psychic, surfing and competing in horse shows on the weekends.  I also began teaching yoga and pilates, so I now had 3 jobs - not too shabby for somebody who would "never work again"!  My immune system was strong enough to allow me to sing at karaoke (sharing microphones), mostly without incident.  As I continued to study "alternative" medicine, including the Gerson protocol, and refined my regimen, by 2011 I was convinced that my disease was completely cured.  The transcription work had become fickle, so I then started my own cleaning and design company.

If only my "strong belief" that I was cured, had been as powerful as Dr. Wessely suggests!  Alas, it was not.  In late 2012 I had begun to get symptoms like myalgias and fatigue, as well as recurrent infections, which at first I attributed to extreme stress related to finances, overwork, rats, a fire, a flood and the subsequent discovery of Black Mold in the trailer where I was living.  I figured I would be ok after I moved out, but soon found that I could not keep up with both the transcription and cleaning/design, so I gave up the latter job.  It was also difficult to summon the energy to teach yoga.  I still, however, refused to believe that I was having a CFIDS relapse until one very crucial and telling event occurred in July of 2013, when my stepdaughter was visiting.

Like approximately 15% of kids, she was an "asymptomatic carrier" of strep, with a long history of recurrent strep throat infections and had even had her tonsils removed, to no avail.  She told me that she had caught strep a few weeks previously "from being out in the rain," but had taken a full course of antibiotics and was now completely over it.  As we sat next to each other in the car conversing, she was not coughing and she did not look particularly ill.  I informed her that you don't catch strep from rain, you catch it from other people, but she didn't believe me because her cousin Miss Know-it-All had assured her that it was, in fact, caused by rain.  In any case, I was quite surprised when I came down with a terrible case of strep throat after precisely the incubation period, with no other exposures.  The infection was extremely painful and unpleasant and knocked me on my ass for a couple of weeks, but of greater concern was the fact that asymptomatic strep carriers are usually not contagious - except to the immunocompromised.

Still, I tried to ignore it and "think positively."  Perhaps it was just a fluke, a strange coincidence.  The state of my immune system was further tested, however, at Thanksgiving when one of my guests had a horrible-sounding cough.  Despite staying about 10 feet away from him, I subsequently developed a deep chest cold which progressed to pneumonia that persisted until nearly the New Year, along with skin lesions reminiscent of my early days with CFIDS.

No amount of thinking or believing, whether positive or negative, has succeeded in changing the course of my illness.  The only thing that has worked, besides taking my herbal medications, is getting lots of rest, something which Dr. Wessely swears makes CFS/ME worse.  It's not always easy to get enough rest, or to "carefully plan the level of activity," especially since I have 2 jobs and live on a 9-acre farm, and the "projects" are never-ending.  I essentially follow the approach of an old Sufi friend: "Doing what needs to be done."  I am pretty active on a daily basis, moving hay bales and 50-pound grain bags, carrying 5-gallon water buckets, one in each hand (!), etc.  It is true that some days I "overdo it," by necessity.  The 5 tons of crushed concrete in the driveway was not going to shovel itself.  The overgrown shrubs and trees were not going to cut themselves down.  Now, contrary to Wessely's claim that CFS/ME patients are "afraid of exercise," I love to exercise - I enjoy it very much, and always have!  Being out in the sun, sweating, feeling the strength of my muscles working, is sheer bliss.  However, it has its consequences: after shoveling the concrete, and after cutting down the trees, I was forced to stay in bed for a couple of days.  This is typical of the well-documented results of over-exertion on CFS/ME.

But you know what also happened?  On both occasions, after spending those two days in bed, I got up feeling much better!!  Not only had my skin cleared up, but other persistent and annoying chronic infections subsided as well.  After two whole days in bed I felt better than I had in months.  Given a little more time and enough rest, I believe that I will continue to recover from CFIDS, based on my past experience and despite anything the doctors may say about it, physical, mental or otherwise.  But, if indeed "belief" was the only thing required, then I would have been completely cured many years ago.  If only it really were "all in your head."

If Dr. Wessely's model of CFS/ME and its appropriate "treatment" is correct, then nothing in my experience over the last 22 years makes any sense.  My treating doctors' voodoo curse, "You have a serious viral illness for which there is no known cure and you will never work again," clearly had no power over me.  Neither has the plan of gradually increasing balanced activity and positive thinking had the curative effect, that Wessely's model would predict.  But my experience is, after all, merely "anecdotal" - a term that people use when they want to ignore inconvenient data.  What could the patients actually know?!  God forbid that we should accept data from the people who are living the experiment in the laboratory of our bodies, day in and day out, year after year, LOL!  I apologize that I have not been able to adequately explain why I find Dr. Wessely so amusing, but I hope that at least some of my readers will get it.  😉

Update 12/06/2016:

In 2011 the results of the PACE study were published in the Lancet and heralded as a major breakthrough in the "treatment" of CFS.  The poorly designed "study," which was based on Dr. Wessely's earlier "research" and involved several of the same design flaws, not surprisingly confirmed his previous "findings," except that the percentage of "recovered" patients was slightly lower.  Insurance companies and government disability agencies were delighted at the PACE results which "proved" that CFS is not an illness requiring expensive medical treatment, laboratory tests, specialist consultations and/or Disability benefits but rather, a mental condition that can be "cured" by positive thinking and exercise.  [heavy sigh]  [big eye roll].  Patients who had already tried that approach for years without any success were understandably less thrilled.  Any doctors who spoke out in criticism of PACE, requesting more actual research into biological causes and treatments of the disease, were called "quacks," "crazies," or "unhinged crusaders" and accused of "harming patients."  I wrote this blog post in response to the ongoing controversy, not that I believe anybody gives a damn what I think.

Today I was pleasantly surprised when a friend gave me a link to a wonderful article about the flawed PACE "study" and that reputable experts are now demanding its retraction!  The article includes a link to one of my favorite reference sites, Virology Blog, which discusses at some length  how the PACE trial was discredited by science last year and why it should be retracted.  VB has addressed many of the same complaints that I had about the Wessely approach, its premises and conclusions.  It should be noted that Virology Blog, as one might infer from the name, does not normally address psychiatric conditions, yet has a page devoted to ME/CFS.  

Thursday, April 7, 2016

My Experience with Disability

I have blogged before about my ongoing struggle to make a living while having CFIDS, for which my SSDI claim was in the initial phase of being approved in California and subsequently denied when I moved to Florida.  People often ask, "How could that happen?!" and, "Why don't you get a new attorney and apply again?"  Because these questions come up frequently, I have decided to blog about it now for reference, rather than having to repeat myself over and over.  So, here is the story of what happened, how SSDI works, and why I can't reapply now.

I described in a previous post how I suddenly went from being an athlete, a dancer, the Poster Girl of Good Health, to being totally disabled by CFIDS in 1992 while living in California.  When I was about to be fired from my job due to chronic infections and having used up all my sick days, the doctor put me on CA State Disability, but I didn't want to be disabled, I wanted to work.  

While convalescing I took a correspondence course and became certified as a Medical Language Specialist, a job that I could potentially do at home.  I got a part-time job but it required working at an office, and soon the same issues with recurrent infections, pain and extreme fatigue interfered with my work, to the point that even four hours typing a day became too much.  I was so weak that it was a major ordeal just to take a shower, brush my hair and drive to work, and by the time I got there every day I was already exhausted.  When State Disability ran out, the doctor informed me, "You will never work again, we need to transfer you from State to SSDI."

I didn't need a lawyer to apply for SSDI in California, probably because I was already on State Disability for a full year.  I only had to sign a few forms and my doctor submitted them to Social Security.  He then sent me to the CA Chief Medical Examiner's office where a doctor thoroughly interviewed and examined me, drew blood for still more lab tests, went over my medical records and finally concluded, "Yes, you are Totally Permanently Disabled.  We're putting you on SSDI.  Don't worry, you will certainly be approved.  Please sign here."  I signed the forms he gave me and as far as I knew, that was that.

My father said that I would not be able to live on SSDI in California due to the high cost of living, and knowing that he was probably right, I moved to Florida to be closer to family.  I then contacted Social Security to give them my new address and find out the status of my Disability benefits. They informed me that my SSDI application would be transferred to the Florida DDS (Disability Determination Services).  They sent me a mountain of paperwork to fill out, which I managed although it was very exhausting.  Soon thereafter I was notified that my claim was denied?!  I called and told them that there must be some mistake, because the State of California Chief Medical Examiner had already declared me Disabled, and they replied, "He has no jurisdiction in Florida."  

At that point I got a lawyer on contingency who was highly recommended by the CFIDS Association, as was my new physician.  We appealed and I had to fill out another mountain of paperwork which seemed to be a repeat of what I had already sent previously.  Despite the lawyer's help and my new doctor confirming the diagnosis made by my CA doctors, I lost both appeals.  I called the SSA in shock and asked, "How is this possible?!  I cannot do my job.  I can't even type a few hours a day anymore, and the State of CA already declared me Disabled!"  The representative answered, "In Florida you are not disabled if you can talk on the phone.  You could work as a telemarketer from home." *

To this day I still do not understand exactly how it happened.  It is not necessary to reapply for SSDI if you move from one state to another once your benefits have already been established.  I can only assume that my case slipped through the cracks because my application was just in the very preliminary stages with the California DDS when it got transferred to Florida.  As to why the CA Medical Examiner was so sure my benefits would be approved, only to be denied by the FL DDS, this too is a mystery.  Although SSDI is a federal program and the states are supposed to follow the same criteria, my lawyer said they don't and some states are much stricter than others, which I have also heard from other applicants.  There was another Florida case denied around the same time as mine, a quadriplegic gentleman who had figured out a way to type by holding a pencil in his mouth to touch the keyboard; he lost his case "because he can type."

I've been asked why I don't get a new attorney and file for SSDI again.  There are several reasons for this but, primarily, my condition has since improved to the point that I am no longer "disabled," at least not by any legal definition.  After my case was denied, when mainstream medicine could do nothing to help me and I had no other alternatives, despite my skepticism I turned to holistic medicine which, to my great surprise, was quite effective. My doctor was amazed at my recovery and released me to return to work at home part-time, although he said I would need to hire a maid because, "You won't be able to work part-time and still clean house."  And he was right, not that his opinion had any impact on the decision by the DDS.  I am currently working nearly full-time and my house is filthy.

From the SSDI standpoint, the fact that I've been working very successfully from home via telephone since December of 2014, in addition to teaching yoga and pilates on the side (!), automatically disqualifies me for Disability, because one of the requirements is you have to be "unable to work for at least a year."  And what does "unable to work" mean?  As Nolo explains, "The fact that your doctor may have advised you not to work, or that you feel too ill to work, does not necessarily mean that the SSA will agree that you are disabled."

This is an important point about Disability that many people fail to understand.  I myself am familiar with the criteria from both sides of the issue, as a patient and from my career in medicine.  After I recovered sufficiently to return to work, part of my job was doing summaries of medical records and exams for Worker's Comp and SSDI applications.  Let's be clear:  Your subjective complaints are irrelevant.  No matter how horrible you may feel; if you have painful knots in the muscles of your neck, back and shoulders made much worse by your typing job, and/or your entire body hurts; or if you wake up feeling like you haven't slept, in a panic** wondering how you will find the energy to accomplish your daily responsibilities, etc., it makes no difference.  SSA/DDS does not care if your house is filthy and there are piles of dishes and laundry all over because you don't have the energy to both work and clean.  All they care about is, can you perform the functional duties of a job, and if not your regular job, any job?

Per SSA, Providing Medical Evidence To The Social Security Administration For Individuals With Chronic Fatigue Syndrome"The medical condition(s) must be shown to exist by means of medically acceptable clinical and laboratory findings. Under the law, symptoms alone cannot be the basis for a finding of disability, although the effects of symptoms may be an important factor in our decision whether a person is disabled...   Evaluation will be made by a disability examiner working in the disability determination services (DDS) in the State in which the claimant lives."

The DDS will base their decision on laboratory evidence (which there is none for CFIDS, the causative pathology as yet unidentified) and objective "functional limitations."  The latter are specifically defined relative to your job duties and measurable in terms of weights and range of motion.  For example, if you had a shoulder injury and you cannot reach over your head or lift a certain weight above chest level, or if you had knee or back surgery and you cannot bend, squat, lift, climb, etc., or if you have nerve injury impairing the use of your hands, or some other physical limitation, this will be documented by DDS.  They will ask your employer to accommodate you, and if the employer refuses, they may send you to vocational rehab to train for another type of job.  If you have foot pain due to flat arches, or knee pain due to some injury, and your job requires being on your feet all day, you will be fitted with orthotic shoes or knee brace, sent back to work and told to sit down during rest breaks.  If you are "merely" in pain without any fixable injury, they will tell you to take NSAIDS and return to work.  

"Brain fog" (a common symptom of CFIDS, fibromyalgia and some related illnesses) will only be considered as a functional limitation if it interferes with your "ability to understand, remember, and carry out simple instructions."  So, for example, if you are a Ph.D. college professor and your brain fog prevents you from publishing or being able to lecture successfully, no problem; DDS will say "you can still work at the grocery store" alongside of the developmentally delayed bagboy.  Again, Disability is not based on whether you can continue doing your normal profession, but rather, if your functional impairment prevents you from doing "substantial gainful activity" of any kind.

Now, I probably should mention at this point, the criteria are slightly different for Mental Disability, but the same general standard of "functional limitation" applies.  The interviewing psychiatrists will carefully evaluate whether, for example, you are able to interact with the examiner and answer questions in an appropriate manner, understand, remember, pay attention, and follow simple instructions.  They will also make note of antisocial, irrational or psychotic personality traits which would interfere with your ability to get along with bosses and coworkers such as combativity, impulsivity, poor judgement, narcissism, delusions, paranoia, etc., and document your prior history of job losses due to such factors.  Although these are not physical impairments, clearly if you are unable to follow instructions, communicate effectively, or get along with others, or if you consistently panic, burst out in a rage or tears under any kind of pressure, your functional ability to hold down a job would be extremely limited.

How do the above considerations apply to my current situation?  Keep in mind that when I applied for SSDI over 20 years ago, I was utterly sick, weak as a kitten, suffering from chronic opportunistic infections, and documented as TPD by the State of California, and yet because I could still talk on the phone at home, was deemed "not disabled" by the Florida DDS.  Thanks to holistic medicine I am now much improved!   The fact is, on a good day I am probably in better shape than many "normal" people.  In terms of "functional capacity" I can carry 5-gallon water buckets (50 pounds) one in each hand while walking through deep mud, throw around hay bales and sacks of grain, saw boards, set fence posts, dig ditches and shovel hundreds of pounds of shit, sand or crushed concrete, and perform other farm activities.  

Of course, good days are sometimes followed by very bad days, as overexertion can leave me bed-bound for 48 hours thereafter, a key identifying symptom of CFIDS reflected by the new term, "Systemic Exertion Intolerance Disease."  But on most days, if I were to be tested for range of motion and physical strength per DDS functional standards, I would pass with flying colors - especially since my current job as Spiritual Advisor demands no such abilities.  It is difficult to imagine a degree of "functional limitation" that would preclude sitting in a chair talking on the phone, which I was able to do even at my sickest.  I will admit I've missed a few days of work due to excessive "brain fog" which interfered with my ability to communicate effectively with my callers, but thankfully such days have been few and far between.  If the "brain fog" were a constant condition then yes, it would indeed be a "functional limitation."

People sometimes ask, since I'm so much better and stronger now, why can't I just go out and get a "real job" (assuming there were any decent jobs around here, which there aren't)?  I could probably get a job, but would not be able to keep one that had regular hours and a finite number of sick days.  Again, I have good days and bad days.  On a bad day it is hard to get out of bed, but as long as I am working at home, I can drag my tired ass to my desk and receive calls.  If I had to take a shower, get dressed, do my hair and face and commute into town, it would be nearly impossible to be there on time consistently, especially since my condition demands at least 10 hours of sleep and I have never been a morning person.  

But, the real deal-breaker is that I continue to have a dysfunctional immune system, which is why SSA acknowledged that I would need to work at home.  Although my immunity has improved somewhat since I switched to herbal remedies and stopped taking pharmaceutical antibiotics, I remain very vulnerable to catching any and every contagious illness and it affects me more severely than other people.  I would probably use up all my sick days within the first few months in a retail or office environment, which is how I lost my job in 1992.  In addition, when my immunity is low my face breaks out in painful purplish-red subcutaneous nodules which would take an hour to attempt to cover with makeup so as to be halfway presentable in public.  Facial appearance is a very real factor in employment which disproportionately affects women, but is completely overlooked by SSA/DDS criteria.

I am currently in a sort of "employment limbo," being too healthy to qualify for Disability but not well enough to be able to hold down a regular job outside of the home.  I do sometimes wonder what would happen if the critics of holistic medicine are successful in getting herbal supplements banned, without which my health would certainly fail and I might not even be able to do my current job due to exhaustion, infections and brain fog.  Would I then become a candidate for Disability?  

Well, maybe, but there are serious logistical concerns.  One is the five-month waiting period from the date of application, before you can receive SSDI benefits.  You need to have some other means of support during those five months (and any additional time it may take for your claim to be approved).  In California I was on State Disability prior to applying for SSDI, but Florida has no such program.  Since I live paycheck to paycheck, if I were out of work for even a few months, I would be homeless.  And even if I did manage to somehow make it to the sixth month, I would still lose my home since SSDI benefits are not enough to pay the mortgage and other bills.

Another concern is that in order for an SSDI claim to succeed, as this Disability law firm explainsmedical documentation is required, including all laboratory and medical records going back to the beginning of your diagnosis.  I have no idea where all my previous records from California may be.  I never received copies of them.  In terms of more recent medical history, I have not see a doctor since 2007.  Even though I now finally have insurance through the so-called "Affordable Care Act," the $4500 deductible makes it useless to me, and I would lose health insurance altogether if I could no longer work, as Florida did not expand Medicaid.

So that is what happened with my original SSDI claim, why I can't qualify for Disability now despite not being well enough to work a "real job," and why I am so extremely thankful for my current position as Spiritual Advisor which I can do from home via phone.

In summary, then:

1.  My original claim was denied by the State of Florida in 1994 despite being very, very sick. At that time I met all the requirements for SSDI.  I had been unable to work for over a year and was already on California State Disability, with complete medical records, laboratory studies and documentation of Total Permanent Disability by the California Chief Medical Examiner.  I had a great lawyer who specialized in CFIDS.  Nonetheless, my claim was denied because I had no "functional limitations" that would prevent me from working by phone at home.

2.  I am currently in vastly improved condition, physically quite strong, and have been working very successfully nearly full-time since December 2014, doing exactly the job that Social Security determined me "functionally capable" of doing:  talking on the phone at home.  I now have no medical records, cannot afford to see a doctor and have no treatable complaints to document.  Do I still have a disability?  Yes.  My immunity is impaired, I have "Systemic Exertion Intolerance" and on a bad day I feel like total shit.  Does that qualify me for Social Security Disability?  No.

3.  As for the suggestion that I ought to reapply for SSDI anyway on the very remote chance of being approved the second time around, this would require quitting my fabulous job, which would result in losing my home worth approximately $350,000 because I have no other source of income with which to pay my mortgage, property taxes and other bills during the 5-month waiting period.  Even if I did manage to make it to the sixth month and somehow miraculously qualify for SSDI benefits, the amount would not be enough to pay the bills and certainly not worth the trade-off of losing everything I own.  Obviously, it would not be a good gamble.


* I could not, in fact, work as a telemarketer, but only because I suck at sales.  I actually did attempt to work as a salesperson for a couple of outstanding companies whose very high-quality and affordable supplements had helped me, and I failed miserably despite their providing me with thorough training.  My current job as a Spiritual Advisor does, however, involve exactly that:  Talking on the phone.

** Although interestingly, you can get SSDI for panic attacks.

Wednesday, March 23, 2016

The Irony of "Affordable Healthcare"

Upon discussing my tax situation on Facebook, one of my friends agreed that the system is totally fucked up and rigged to keep people in poverty.  Another friend said, “I don't think the government is fucked up, most of it makes perfect sense when you work through the details.”  To which I replied, “yeah if you’re fucking rich it makes perfect sense, otherwise not so much.”

Whenever people tell me the system “works” or “makes sense” I have to wonder whether they are speaking from experience - like, did it really “work” for them?  If so, well, good for them. I wish I could say the same.  Or, are they just voicing an opinion based on political philosophy ungrounded in reality?  At least when I advocate anarchosocialism, I admit my ideal is unrealistic.

I will say that the ACA did in fact work great for my husband, who had a life-threatening hernia that he acquired on the job, not covered by Workers’ Comp because he was an independent contractor.  He could not obtain surgery due to making less than poverty-level income in Florida, a state that did not expand Medicaid.  After he finally found an employee position that paid just barely enough to qualify for insurance, Obamacare literally saved his life.  The surgeon said if he’d waited any longer it would have been fatal.  The insurance covered everything, although not without a huge fight.  The hospital billed the insurance company $39,900 for an uncomplicated hernia repair which should have cost $6000, and then the insurance company denied the claim and tried to make my husband pay the $39,900.  It cost me nearly $1000 in lost time at work while I played “lawyer” and had to take the case to the State Insurance Commissioner.  We ultimately won the fight and, more importantly, he lived, so this would be an example of when the system “works” although the details certainly did not make perfect sense.

As for myself, I’ve previously described my own experiences and how “the system” in general has not worked for me personally: Why I am Not Thrilled with Government.  That was written before the bankruptcy limbo and tax fiasco.  But more specifically, I would now like to describe what I find incredibly ironic about my current situation with regard to disability, medicine and health insurance.  

At first, I was excited to finally be able to get real insurance to have “just in case,” because before the ACA nobody would cover me.  The only insurance I could get was an accident policy which cost $59/month and would pay $5000 towards emergencies.

While living in California I was diagnosed with CFIDS, an “incurable illness” according to mainstream medicine.  I tried to keep working part-time but got worse and went on CA State Disability, (the only time the system has ever worked for me!).  When State Disability ran out, the doctors said, “You will never work again, we need to put you on SSDI.  Don’t worry, you will certainly be approved.”  My SSDI was in the preliminary stages of approval in CA when I moved to Florida at my dad’s suggestion to be near family and because, “you won’t be able to afford living on SSDI in CA.”  This was probably true, as I have several friends on Disability in CA who are really struggling to survive.  Upon moving to FL, my SSDI was denied despite having a great lawyer because even though SSDI is a federal program, the states get to decide who is approved and for what reasons.  So friends, if you are disabled while living in a state like CA which offers good social services but has correspondingly high rent, all you need to do is move to a state like FL and your disability will magically disappear!

I had lost my previous insurance along with my job, not that allopathic medicine could do jack shit for my condition anyway.  All the doctors were able to do was give me more and more antibiotics for the recurrent infections which in retrospect was ultimately a bad idea, leading to resistant bacteria and massive candida overgrowth.  Having no other alternative, despite my initial skepticism I turned to holistic and herbal medicine which, to my surprise, was effective.  In fact, my health improved even more after I stopped seeing mainstream physicians [as a patient] altogether about 10 years later, although I continued to associate with them on a professional basis until 2014.  Thanks to holistic medicine I have recovered sufficiently to be able to work almost full-time and make a decent living.  However, now I am facing unaffordable taxes and mandatory health insurance through the “Affordable” (?!) Care Act which I cannot afford and hope to never use, reserving it for major emergencies like broken limbs or being kicked in the head by a horse.  

Furthermore, this insurance that I am being forced to buy, at the tune of about $180/month with the $4500 deductible, does not cover the herbs and supplements that actually make me healthy enough to work!  I looked into HSA (Health Savings Accounts) because I seemed to recall that in the past HSA could be used for vitamins and supplements, but the current rules say, “you will need to submit a Letter of Medical Necessity, signed by your doctor, to verify this expense is a medically-necessary treatment for a known medical condition.”  Obviously, it is highly unlikely that a mainstream physician would sign such a letter, given that the FDA does not recognize herbs and supplements as legitimate treatment for any disease.  The only local doctor I know who would do this for me is an M.D. turned-holistic physician who is not on my plan and who, in fact, had her insurance privileges revoked due to curing an advanced-stage ovarian cancer patient using Issels therapy, which while legal in Germany where she studied, is not an approved therapy here in the U.S.

After doing my taxes, which included a $500 fee related to underpayment of premiums, I panicked, wondering how on earth am I going to pay my outrageous new taxes, now that I am above the poverty line for the first time in years?!  But, I’m pretty good at math.  So after a couple of sleepless nights doing math in my head, and then on the computer, I calculated how many additional hours I would have to work to pay my taxes in 2016 - keeping in mind, of course, that any “extra” money made will also be taxed, and that I’m an “independent contractor,” i.e. “de facto employee without benefits” and my income is variable.  I came up with what seemed like a reasonable estimate, took a deep breath and said, “whew!  Ok, it won’t be easy, but I can do this.”  I then went to healthcare.gov, updated my income figure, and was surprised to see that my premium and out-of-pocket maximum had nearly doubled, and my deductible had jumped from $0 to $4500.  Upon further investigation, I learned that the ACA bases your deductible on your income.

I suddenly realized that my insurance will now be completely useless for the purpose I would want to use it:  riding my horse.  I’ve been riding for 50 years, since age 2, been bucked off, bailed off, kicked, stepped on, even had my horse fall on top of me and knock me out cold for a moment, none of which ever sent me to the hospital, but there’s “a first time for everything” and I can’t afford to pay $4500 on the chance of breaking a limb, especially at my age.  Not having anticipated that my ACA insurance deductible would go up to $4500, I had previously cancelled my $59/month accident policy, believing that I was now fully covered under the ACA, and I couldn’t afford both.  So I guess I won’t be able to ride after all, and I’m paying these premiums for nothing.  

I had the nagging feeling that I was overlooking something and woke up in the middle of the night with a terrible realization.  When calculating the additional hours I would have to work to make enough “extra” money to pay my taxes, I had failed to take into account my new insurance premiums!  Now I would have to actually work even more hours to be able to pay that as well.  But, if I make more money, my premiums will increase correspondingly.  If I were to work the number of hours necessary to make enough money to actually pay everything, I would definitely need insurance because I’d end up in the hospital.  It’s simply not doable. 

Holistic medicine has improved my condition from being too weak to take a shower, to being able to carry a 5-gallon bucket of water (50 pounds) in each hand while walking through deep mud, throw hay bales around, dig ditches, shovel concrete, and many other farm-related activities that many “healthy” people my age cannot do.  It has enabled me to teach yoga and pilates and to work (at home) nearly full-time, or maybe even full-time if I totally neglect my house and everything else, but it didn’t turn me into Superwoman.  No matter how I try to manipulate the numbers, there is no way I can earn enough money to win this game.

Again, I am convinced the system is rigged to prevent us from clawing our way up out of poverty.  People on SSDI are especially in a catch 22 because SSDI doesn’t give you enough to actually live on, but if you manage to work and get close to making enough money to survive, you may lose your disability payments, despite the fact that you aren’t well enough to work a regular full-time job.  

Wednesday, March 9, 2016

This Blog is Censored

I was in the midst of working on Part 2 of "How I Became a Medical Heretic" when, to my considerable surprise, I discovered that my comments in online discussions were being censored!  This is the most excitement I've had in some time.  On the one hand, I am quite flattered that anybody would find my blog important enough to censor and as they say, "bad publicity is still publicity."  At the same time, needless to say, it is quite disturbing in terms of 1st Amendment rights.  I read about this new Orwellian policy in an article at Natural News, "FBI conspiring with National Science Foundation to linguistically surveil the social media posts of 'anti-vax' activists and health freedom activists."

Note, I would not call myself "anti-vax" because I haven't yet been able to find enough conclusive evidence to be entirely convinced either way.  Frankly, in the absence of double-blind placebo-controlled studies which are not performed for ethical reasons,* and without large-scale studies of potential long-term health consequences including autoimmune disease, it is difficult to reach a definite conclusion.  However, I have been accused of being an "anti-vaxxer" in the past merely for mentioning, e.g., that the acellular pertussis vaccine has turned out to be less effective than hoped due to wearing off quicker and, more importantly in terms of "herd immunity," failing to prevent transmission of the disease, or pointing out that the oral polio vaccine causes polio in a small percentage of people (which is why it is no longer used in the United States and why India still has polio despite being declared "polio-free"), or that the flu vaccine is effective only about half the time at best.

I will say that vaccination is a fabulous idea in theory from the standpoint of homeopathy, where introducing a tiny amount of a disease-causing substance allows the body to mount a defense against that disease.  The difference, of course, is that the ingredients in true homeopathic remedies are so diluted as to be undetectable and therefore placebo, whereas vaccines do contain a measurable, albeit small, amount of disease material - which is fine as long as you're not squeamish about violating the principle of hygiene, namely, to avoid pathogens, rather than purposely introducing them into the body.

But, we must keep in mind that germs, like drugs, are bad ["umkay"] except when they are given to you by a doctor, in which case, they are good.  For example, amphetamines are "bad" if you take them even occasionally without a prescription to combat fatigue, to study, or to lose weight, but are "good" when your doctor prescribes them to you for the exact same reasons, or to your very active child on a daily basis to make him behave.  In the same way, while germs are normally thought to cause disease, when injected into your body by a doctor they stimulate your immune system, making you healthier.  Doctors have this power to change the very nature of a thing due to their having attended medical school, where they learned the magic incantations in Latin and obtained the White Coat of the High Priest.

So, while I am equivocal about vaccines, I am absolutely a "health freedom activist" in that I fully support the crazy, heretical notion that individuals ought to have the final authority over what happens to our own bodies including what we choose to eat, drink, smoke, snort or inject.  In addition, we should be free to openly discuss those decisions and publicly express our opinions and the reasons for our choices without censorship.

At this point, no doubt someone will object that vaccination is in a different category because if a person refuses vaccines and/or encourages others to do so, they are endangering the public, whereas what you may choose to eat or drink is harming only yourself.  First of all, if vaccines work and you are vaccinated, you have nothing to worry about.  Then the argument shifts to, but what about immune-compromised people (such as myself) who depend upon herd immunity?  Thank you for being concerned about my well-being.  BTW, if you have recently received a live-virus vaccine, please stay away from me for about 3 weeks, because while you probably are not contagious to a healthy person with a normal immune system, it is possible that I could catch the vaccine virus, which is why you are also not allowed to visit the children's cancer ward.

Secondly, especially now that we have mandatory health insurance, a person's poor dietary and lifestyle choices do in fact affect everybody else.  If you are smoking cigarettes and subsisting on junk food and sugary snacks washed down by soda pop, the premiums that I am being forced to pay for something that I will rarely if ever use are helping to pay for your treatment for diabetes, heart disease or lung cancer.  Don't get me wrong, I'm very thankful that I finally can obtain health insurance just in case of emergencies like serious trauma, because before the ACA, nobody would insure me due to CFIDS.  All I am saying is that healthcare costs due to unhealthy lifestyle are a burden on society as a whole.  If "the public good" takes precedence over our freedom of choice, then let's outlaw junk food and soda pop.

While we're at it, we might as well forbid all sports that are inherently dangerous, like horseback riding, bull riding, cheerleading, gymnastics, mountain climbing, football, surfing, skateboarding, snowboarding, mountain biking and motocross.  And we must ban swimming pools!  About 3500 people die per year from drowning, and it is the number one cause of accidental death among children ages 1 to 4, with 700 children drowning in home swimming pools every year.  In addition, many illnesses can be spread through pool water despite chlorination.  Is our freedom to enjoy these sports - my personal favorites being horseback riding and surfing - worth the high cost to society from the resulting injuries including sprains, fractures, concussions, brain damage, paralysis and even death?!

People die every day from a lack of blood and organ donors.  Donating blood or bits of tissue won't hurt you and you can survive with just one kidney.  Is your bodily sovereignty more important than the interest of the public good in saving lives?

And with regard to mandatory medication, why stop with vaccines?  We could make everyone take psychiatric meds to ensure docility and prevent sociopathic behavior such as crime and religion.  For that matter, if we are going to forcibly medicate people with anything (and I'm not saying that we should), in the best interests of society, IMO it ought to be birth control.  The government would make science-based decisions as to who may breed, how many kids they would be allowed to have, and which pregnancies should be terminated based on fetal abnormalities.

This may sound awfully reminiscent of Nazi Germany, and it is.  But to give credit where it is due, the Nazis had a very orderly, productive society with a strong emphasis on family, public health and safety, and also advanced medical research which gave rise to the modern pharmaceutical industry.  The people were kept on a short leash and those who objected sent to concentration camps, but it was for their own good and the benefit of society, just like the censorship described in the Natural News article.  Under that article I posed this comment, which was deleted by Disqus:

Not to be paranoid, but - I wonder if this is already happening. I've had some strange new experiences online the last few days. I have been a reader of Natural News for many years and participated in the discussions regularly, without incident until recently. I write a blog called "Medical Heresies by Metalnun" in which I discuss many of the same topics as Natural News and describe how my initial blind belief and enthusiasm in mainstream medicine gradually turned to disillusionment over the course of my 22 years working in the field, and why I turned to holistic wellness. I included the link in a comment on a relevant article here and it was flagged as Spam and my subsequent comment in that thread was deleted! I make every effort to be polite and reasonable in my comments and my little blog only has about 3 readers so it shouldn't be a great threat to anyone, LOL... Also deleted was a comment in which I included a link to another site regarding meth and amphetamines. I inquired of Natural News, "Why are my comments being labeled as Spam and deleted?" and they replied that if somebody reports your comment, Disqus will label it as Spam. Why on earth would anybody "report" these comments? At first I suspected it was due to including links - which is problematic if we want to document anything! - but my subsequent deleted comments did not include links. Is it possible that pharma trolls and/or FBI/NSF employees are monitoring Disqus and "reporting" comments that put mainstream medicine in a bad light? Has anybody else had this experience lately?

When I subsequently went back and removed the title of my blog, I was able to post the comment.  Several of my previous posts on Natural News which contained a reference to my blog had been likewise deleted.  At first I questioned whether Natural News may have deleted my posts, but they assured me they did not and it must have been done by Disqus.  I am inclined to believe them, because while I don't always agree with everything they say and I feel that sometimes they may exaggerate or go a little overboard, we are in agreement more often than not.  Also, in the past I have occasionally posted comments that were critical of something in a Natural News article, such as a factual inaccuracy or nit-picky medical terminology error, and they have never deleted those posts.

As mentioned in the above comment, I've been participating in online discussions at Natural News and other sites for years, without incident.  I have had just one previous post deleted when I commented, "The flu vaccine is at best around 50% effective and last year was only 19% per the CDC," and a very rude person responded, "Your comment proves that you are a moron," to which I replied, "Your comment suggests that you are an @sshole."  The @sshole post was deleted.  Otherwise, I've never been censored before.

Upon reflection, this recent mysterious disappearance of my online posts began after I watched the Frontline episode "Supplements and Safety" and commented there.  I didn't see my post but thought nothing of it at the time.  Shortly thereafter I came across an article on Forbes entitled, "Death by Dietary Supplement" in which the author says, "the body count will continue to rise."  I posted a couple of comments on that article pointing out that contrary to the title, it was unclear who, if anyone, had died and what the alleged "body count" was, as discussed in my blog article, "Rising Body Count Results in Supplemental Hysteria."  Both of those posts on Forbes disappeared.

Then after I posted "How I Became a Medical Heretic, Part 1" on February 22, my comments began disappearing from Disqus.  When I read the recent Natural News article about government surveillance of online discussions (referenced above), it all began to make sense.  And since my comment under that article was immediately deleted, I can reasonably conclude that I am not just being paranoid and, in fact, the assertion made in the article is true.  We are being censored.

* at least, not here in the U.S., where we are told that it would be unethical to give a placebo to any of the participants, thereby depriving them of immunity against a potentially life-threatening disease.  However, to my surprise, I did come across a U.S. sponsored study of the pertussis vaccine in 1992 in Italy and Sweden in which some children received different pertussis vaccines and the control group did not.  The rationale was that while pertussis was considered deadly here in the U.S., vaccination rates were low in Italy and Sweden because there had been few deaths from pertussis since the 1960s despite it being a common childhood disease in those countries.

Monday, February 22, 2016

How I Became a Medical Heretic, Part 1

A Crisis of Faith

As discussed in the previous post, "Rising Body Count Results in Supplemental Hysteria," I use supplements myself.  Having recently retired after 22 years working in medicine with specialty in oncology and post-graduate education in pharmacology, I am now a holistic wellness counselor.  My current approach to health emphasizes lifestyle, especially diet, exercise and stress reduction, with a little help from natural supplements as needed, reserving mainstream medicine for what it is really good at: emergencies such as surgical repair of major trauma.  Over the years I became disillusioned with allopathic medicine and increasingly skeptical of its safety and overall long-term efficacy in producing and maintaining "health" per se.  But, that wasn't always the case.  

In my youth I completely agreed with the sort of views being promoted today by the so-called quack-busting "skeptics" at Quackwatch, SkepDocSkeptical Raptor, and other "science-based" websites which, of course, did not exist back then.  My views changed both as a result of my own personal experiences as a patient, and my insider's perspective working in the field of medicine which I once believed in wholeheartedly.  I ultimately grew to suspect that my absolute faith in its magical healing powers may have been misplaced.  To be fair, like most laypeople my expectations of what Medicine and its High Priests, the doctors, could and could not do were somewhat unrealistic.

Since I was a small child, I've always loved science, and still do today, which is why it pains me to be called "anti-science" by the "skeptics" due to my use of supplements and holistic approach to health.  But, my view of science, as of medicine, was influenced to a very large extent by science fiction, especially the t.v. show "Star Trek," which I have watched since I was a toddler.  Dr. McCoy was one of my heroes.  I loved when he would say, "Dammit, Jim, I'm a doctor, not a __________ [fill in the blank, e.g. "bricklayer"]!" and then proceed to save human and/or alien lives using some novel therapy, like Quikrete to patch up a phaser wound on the Horta, a silicon-based life form who had been shot while trying to protect her eggs, which the miners on the planet had mistaken for convenient silicon nodules until Mr. Spock performed a Vulcan mind-meld with the Horta, revealing otherwise.

While Star Trek was fantastical, some aspects of the fictional show have crossed over into the real world today.  We don't yet have warp drive or transporters, but our cell phones now surpass the technology of the Star Trek "communicator," and audiovisual communication via Skype allows us to converse face-to-face with people from around the globe and even our astronauts at the International Space Station.  Some of the Trek medical devices have also materialized including a tricorder, among other things!  And our ability to analyze DNA, a popular method used by Star Trek doctors to identify aliens, isolate pathogens, and distinguish relatives from imposters, has advanced significantly in the last 40 years.  Still, we are nowhere near where I thought we would be by now.

The fictional exploits of Dr. McCoy aside, in my youth I had total confidence in real-world science-based medicine.  My mother was a fragile type 1 diabetic requiring numerous insulin shots daily, with frequent 911 calls for hypoglycemic crises so severe that she was temporarily paralyzed and could not speak or even swallow.  My best friend Nora's brother Charles had autism, the only person I'd ever met with that disorder until fairly recently; it was as if he was trapped inside his own mind, aware of the outside world but unable to communicate.  I was quite sure that by the time I grew up, we would have found cures for both of those diseases, along with cancer and others.  I hoped that the breakthrough would happen in time to help my poor mother, whose health grew steadily worse over the years.  Surely we would discover a drug, a chemical key to unlock the door on Charles' mental prison.  And we would find a way to reverse the pancreatic damage or even grow Mom a new pancreas!

The doctors had forbidden Mom to get pregnant but she ignored them because she desperately wanted a child.  We both survived my birth by emergency C-section at 7 months only thanks to the miracle of medical technology.  After being released from NICU, my own experiences with medicine were mostly limited to routine check-ups, as I very rarely got sick.  I enjoyed the infrequent doctor visits and didn't mind the vaccinations which, as a military brat and traveling overseas, I had the hell vaccinated out of me.  Mom had explained, "The shot will give you just a little tiny bit of the disease, so that if you ever run into that germ again, your body will remember it and be able to fight it off and you won't get sick."  I thought that was very cool!  And injections were an opportunity to demonstrate your courage.  Only sissies cried, and I was no sissy.  I was brave, and I trusted the doctors.

A fan of the t.v. shows "$6 Million Man" and "Bionic Woman," I believed that medical technology could not only repair injuries and birth defects, but would go beyond that to make us better, stronger, faster, smarter than we are.  I was a fervent believer in Better Living Through Chemistry and never questioned the safety of said chemicals, because if they were unsafe, obviously the FDA would not permit their use.  In my teen years I began studying pharmacology and was especially interested in psychopharmacology.  I had high hopes that we would soon not only cure autism and depression, but also laziness, stupidity and antisocial behavior by chemically stimulating and/or replenishing the appropriate regions of the brain.   We could go beyond mere normalcy to enhance or access specific parts of the brain in new ways; perhaps there was a drug that would make us smarter, improve our ability to do math, or even allow us to perceive the hidden dimensions which string theory says are rolled up into the four that are usually available?!  The possibilities seemed infinite.  Thanks to science, we could overcome the limitations imposed on us by imperfect nature.

I knew that many of our drugs were originally derived from plants. In my the course of my pharmacological studies I read books by researchers who, e.g., studied with shamans in the Amazon, where they investigated medicinal plants which they brought back with them to the laboratory to extract and refine the biochemically active components, which would eventually be synthesized as pharmaceutical drugs.  I believed that natural herbal substances were primitive and inferior.  Extracted drugs were "better" because the active ingredients were purified, concentrated and standardized for dosage, and synthetic drugs were better still, a vast improvement over nature.

I vividly recall an incident in the early 1980s where I was visiting a childhood friend and his fiance' at their home.  They had several bottles of vitamins and herbal supplements on their kitchen table and I questioned, "What is this?"  My friend said, "We've been making an effort to get healthier.  She has convinced me to start eating organic foods and take vitamins and stuff."  "All food is by definition organic," I pointed out.  "As for this other stuff, if it actually worked, the doctors would be prescribing it!"  They exchanged a knowing glance and then his fiance explained, "Doctors might not know about it because they don't study supplements in medical school.  One of these products is folic acid, which is important for preventing neural tube defects - just in case we might get pregnant!"  They gazed into each other's eyes, holding hands and smiling.  I snorted and rolled my eyes, although I had to admit my formerly pasty old friend looked better than I'd ever seen him, with beautifully clear, radiant skin.  I told myself it was probably just a result of being In Love.  I was surprised when the CDC coincidentally recommended folate supplementation to prevent neural tube defects in 1991.

That same year I had my first experience with serious illness and the unexpected limitations of Medicine.  After my escape from the NICU as an infant, my subsequent childhood had been remarkably disease-free.  I was the child who never got sick.  Even when an illness swept through school and everyone around me was quite sick, I might feel a bit under the weather for a day or so, and then bounce back.  As an adult, I had likewise seemed impervious to disease, with an incredibly strong constitution.  The poster girl of good health, I swam and surfed in the ocean in winter without a wetsuit, rode horses, hiked up and down mountains, danced and did yoga, grew organic vegetables (yes, I finally decided my friends were right), and with the exception of surgeries for appendicitis in college and a near-fatal auto accident in 1988, my only reason for seeing doctors was to obtain birth control.  While those surgeries were ultimately successful in saving my life, in both instances awful things were done to me without my fully informed consent, resulting in a profound and lasting fear of interacting with doctors, at least as a patient.  I may discuss this in another blog post, but what is interesting is that these experiences did not damage my high opinion of Medicine; rather, I considered these events bizarre aberrations to be blamed on the particular offending doctors, and not a reflection on the medical system as a whole, in which I continued to have the utmost faith despite my personal terror.  

That only began to change at the beginning of 1992.  In the summer of 1991 I was suddenly struck by a flu-like illness that came out of nowhere (no apparent vectors of contagion) and knocked me on my ass, as described here.  After subsequent recurrent bouts of pneumonia, by early 1992 I had used up all my sick days, for which I was about to be fired.  Back then employers could fire you for being sick; I don't know if that is still the case these days.  Anyway, I went to my doctor again to find out what the hell was wrong with me and he took a lot of blood to test for everything under the sun.  When the results came back, he said, "The good news is, all your blood work came back negative - HIV, Lyme, EBV, etc."

"Great," I said, "So that means there's nothing wrong with me!  But... then why do I keep getting sick?"

His expression sad and compassionate, he said gently, "You have Chronic Fatigue Syndrome, more specifically, the Immune Dysfunction variety."

"What?!" I was annoyed, and protested, "That's not a real disease!  That's like the Yuppie Flu, I read about it in the newspaper, it's a mental thing!  And you said all my labs were negative?!"

The doctor explained, "No, unfortunately it is all too real, and it is physical, not mental.  It is a serious illness.  Since we don't know what pathogen causes it, there is as yet no specific lab test, making it a diagnosis of exclusion."

"Diagnosis of exclusion?  What does that mean?!"

"It means that we test for every other possible known disease that could be causing these symptoms, and rule them out.  With all other possibilities being eliminated by negative labs, the default diagnosis is CFIDS."

This sounded quite dubious to me, but he was after all the Doctor.  I said, "Umkay....  So, what is the treatment?"

"There is none.  I am so sorry."  ?!

I was speechless.  Not only had I been diagnosed "by exclusion," i.e. without any laboratory evidence, of a serious disease which I'd previously been led to believe was a mental condition and had somehow managed to destroy my immune system, but also, there was no treatment.  This wasn't supposed to happen.  The Doctor was supposed to have the answers.  When I went in there I was confident that he would have used our advanced medical technology to analyze my blood work and figure out exactly what was wrong with me and then prescribe the appropriate drugs to cure it.  At that moment my absolute faith in Medicine was seriously shaken for the first time in my life.

That was 24 years ago and as of today, we still have no definitive lab test for CFIDS and the cause of the disease has not yet been identified.  In fact, in the absence of any specific viral etiology, we seem to have gone full circle, with some doctors returning to the old theory, "it's all in your head" despite research to the contrary by neurologists and immunologists.  Now, I am a proponent of "mind over matter" to a certain extent; for example, as a yoga adept I can exert conscious control over my heart rate and blood pressure.  However, it seems really unlikely that I could, by sheer negative thinking and/or bad attitude, cause my B lymphocytes to misbehave, thereby inducing the recurrent viral, bacterial and fungal infections.  In any event, like most other chronic illnesses, there is no cure or even reliable treatment for symptoms.

Over the years, my dear mother suffered horribly from the ravages of type 1 diabetes despite having "the best medical care available," which mostly involved hacking off bits of her limbs.  In 2009 she was blind, demented, had lost the use of her hands and was confined to a wheelchair.  The doctors were able to keep her "alive" or rather, prolong her misery for another year, by a final surgery that left her with just a stump of femur and agonizing "phantom pain" that was far worse than the actual leg pain had been, unremitting until the day she died in 2010.  Contrary to the high hopes I held as a child, there is still no cure for diabetes and more people have it now than ever.  In 1966 1.45% of the population was diabetic, and as of 2014 the number has jumped to 9.3%, per the CDC, many of these involving an alarming trend of type 2 diabetes among children, which was previously unheard of.

Along with diabetes, we have seen a steep increase in other autoimmune diseases including Guillain-Barre, lupus, Hashimoto’s thyroid disease, MS (multiple sclerosis), IBD (inflammatory bowel disease, which includes Crohn’s disease and ulcerative colitis), celiac disease, and asthma.  Although vaccine-preventable diseases and most infections have declined, antibiotic-resistant bacteria are now becoming a huge problem, and meanwhile the rate of autoimmune disorders has tripled over the last 30 years, leading some researchers to suspect that we may have traded one set of diseases for another.

President Nixon declared a war on cancer in 1971 and we still have no idea what exactly causes it, let alone how to cure it.  While cancer death rates have declined, the incidence is rising, with 1 in 2 men and 1 in 3 women developing cancer in their lifetime.  Some try to explain this away by saying, "It's just because we are living longer," but cancers among children and young people are also increasing.  "About $200 billion has been spent on cancer research since the early 1970s, and the five-year survival rate for all people diagnosed with cancer in the U.S. has risen from about 50 percent in the 1970s to 65 percent today."  - LiveScience  So, after 40 years of research, 15% more cancer patients survive for 5 years after diagnosis, but it must also be taken into consideration that we are diagnosing them sooner as well, which may inflate the survival figure.  A cure remains elusive and, disappointingly, some experts seem to have given up and are now saying that we ought to change our approach and just treat cancer as a "chronic illness" to be treated with periodic chemotherapy.

As for Charles, in the 1960s 4 in 10,000 children like him were diagnosed with autism, whereas today the rate is 1 in 68, per the CDC.  The experts assure us that there is no actual increase in the number of children with autism, rather, we've just changed the diagnostic criteria to include milder cases and some which were formerly diagnosed with mental retardation or other disabilities.  However, I can't help wondering, regardless of the diagnostic label, where were all those other kids like Charles when I was growing up?  Were they hidden someplace?  Maybe I'm just not remembering them, but it seems to me, years ago it was relatively rare to meet developmentally disabled children by whatever definition.  Whether or not their numbers have increased, we are no closer to finding a cure or even identifying a cause for their disability.

My personal diagnosis of a serious, incurable and essentially untreatable chronic illness in 1992 forced me to realize that my childhood faith in "science-based medicine" and my expectations of what it could do, were unrealistic.  Still, I wanted so very badly to believe in its power!  And I continued to do so for a while, thinking that perhaps its failure in my own case was just a rare fluke.  Although I didn't realize it at the time, in retrospect that belief reflected my conditioning as a patient, namely, to discount the evidence provided by our own body and senses when it questions the establishment dogma.  Any data obtained through our personal experience was, at best, "anecdotal," an isolated incident from which no useful conclusion could be drawn.  Back in the days before internet discussion boards, the illusion of isolation was easier to maintain because we didn't know about all the other patients in similar situations.  Medicine worked! - and if it didn't work for me, there must be something very wrong with me.  I later learned in the course of my career in the field that this attitude is reflected in the medical language itself, when we say, for example, "The patient failed chemotherapy."  As my faith gradually waned over the years, my initial enthusiasm eventually turned to disillusionment, and medical technology reminded me increasingly less of the Bionic Woman and more of the Borg.