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.