My mail this morning bears witness to the routine abuse of ME/CFS patients by their doctors, especially when forced to seek care in a hospital. Here is one:
Do you have any survival advice for M.E. patients who are admitted to the hospital? I had a very negative experience when I was admitted to the hospital a few months ago for an inflamed appendix and severe stomach pain (no surgery done). Besides the complete lack of sleep for three days, neglect, and bungling of care, there was the underlying disbelief that there is a real illness. I know now to try to avoid hospitals, as it was perilous to my health and overall condition, setting me back perhaps in permanent ways.
Because of my negative experience, I requested some of my hospital records, and found that the doctors wrote things that are just not true, were written with sarcasm, and seemingly to protect themselves. I can’t believe how simply asking for my normal sleep prescription the first night led to the surgeon on call (who denied me my sleep Rx) writing in my records that “she may need psychotropic drugs. She did ask for Ambien.” He also falsely stated that I was taking Librax for anxiety, which was not true. I have never been prescribed anything for anxiety. The next doctor I saw, a GI specialist, read what the previous doctor wrote, and wrote that I have an anxiety disorder. My husband was there the whole time and said he noticed no evidence of anxiety, and that these statements seemed to come out of the blue. I have to wonder how much of this is due to there being a medical history at the hospital with a diagnosis of CFS (from diagnosis codes on outpatient x-rays, etc.?), and perhaps gender bias. On my last day in the hospital, just prior to an endoscopy, the same G.I. doctor (who was now in charge of my care) was very impatient, rude, and verbally abusive (shouting at me). Then after this reprehensible behavior he had the nerve to write in my diagnosis, along with stomach and esophagus findings, “severe anxiety disorder as well.” There was no basis for this. Again, my husband was also present. I did mention having episodes of fainting that follow a squeezing stomach pain. But I don’t think anxiety is causing it. I have never been diagnosed with an anxiety disorder, he did not prescribe anything for it, nor did he mention it to me in person. I am asking for your insight – what can I, or should I do about my records? I am concerned it will affect future care. In fact, I think it already has – I had a follow-up with a different surgeon who had received my records. At the time of this appointment, I had not yet seen what was written in my records. While this surgeon was very pleasant with me, when I mentioned to him the stomach squeezing and fainting spells, he said he didn’t think it was anything to worry about. I thought that was odd. When I had the phone consultation with you, I think you said it was probably due to autonomic dysfunction, but other causes should be ruled out. How can the doctors be educated about the autonomic dysfunction?
I advised her to complain to the hospital administration about the behavior of it’s staff physicians and to demand that any inappropriate references to “anxiety” by expunged from her record. She should demand an apology. We all should. Regularly. This patient’s account is a good example of why CFS patients get better care if they don’t mention the underlying diagnosis. If this patient had presented as a healthy woman with abdominal pain, they would have been all over it.
From one of my patients, who has the common complication of palpitations from various benign dysrrhythmias, related to her dysautonomia. She was sent for an ablation a couple of years back:
They took me to the operating room looking for an arrthymia. They could not find one. I was being medically abused by doctors giving me benzodiazapenes [which she does not tolerate] which were contributing to the heart issue yet they kept giving me more. I didn’t know that the benzodiazapenes were joining forces with the disease making me sick and catapulting me into hell. They took my gown off and put me on a freezing table I was begging for my parents screaming and sobbing uncontrollably. In a room full of men and women nurses and techs they proceded to shave my whole pubic area. They were not kind, gentle, or discreet. They were harsh. Then they cut into my artery. I kept telling them I didn’t feel relaxed or calm and the medication wasn’t helping. They told me they would give me some more benzodiazapenes! I was wide awake. When they got to my heart they injected some adrenaline to induce an arrythmia. I now began screaming for them to stop. I thought this was the end for me. They told me to be still or I’d mess it up. They had men hold me down. I don’t think terror is a sufficient word to describe the horror taking place in my mind and body. After he could not reproduce an arrhythmia they wheeled me out a shaking mess and I remember the doctor told me I must be producing too much of my own adrenaline and that was causing this. I asked him how. He said by worrying and because of my anxiety.
Then they wheeled the bed to the next chamber of hell. The emergency room. The world renowned hospital had nowhere to put me so they stuck me there next to dying men in heart failure. They told me not to move for 6 hrs or I would risk bleeding to death. But the best was yet to come. When I started having cardiac episodes and more adverse reactions as the benzodiazapenes they had pumped in me began to wear off they called in the psychiatrist. He sat by my bed and told me he would give me the drug Seroquel to put me to sleep, confirming what had yet to be uttered outloud thus far. I was deemed mentally ill to this facility. Labeled, stamped, sealed, delivered. Somewhere during that sickening day I had earned my title. I am not and have never been psychotic. How dare they put such drugs into a young innocent suffering body. After administering this powerful medication to me I fell into some delusional form of sleep with vivid dreams and illusions taking place all the while still half awake. I was awake enough to hear the man just besides me, only a curtain between us, have cardiac arrest, and die. I hope everyone who was involved in my care in that facility that day rots in hell. That memory haunts me and always will. I don’t think terror is a sufficient enough word to describe the damage that took place to my mind and body.
But I think the one that takes the cake. was my experience at the Mayo Clinic! When I became sick the 2nd time around with unexplained total body shutdown, as I’ve come to call it, I headed to the Mayo Clinic. This was the place everyone said to go when no one else could figure you out. So with my doctor’s help I got in. We ventured across the country to Minnesota. I could barely walk. I spent two weeks there being examined from my toenails to my ponytail. I was sent to see a psychologist everyday when I was there so they could be a part of “the team”. I was told that the cardiology department there wrote the book on POTS, they discovered it. And the CFS center was the best of the best. I will not recount the abuses taking place during my two week stay but I will share two noteworthy final encounters. On my last days there I went to the cardiology department to get my final report. I was brought into a room where I waited for an arrogant dapper South African cardiologist to make his grand entrance. The whole meeting went like this and I kid you not. “Young lady you do not have POTS. Not even close. You have no autonomic problems at all. Anyone who tells you different is a fool. I wrote the book on POTS. In addition a girl with your symptoms of depression will not get any beta (he pronounced this BEETA blockers) from me.” He then walked out of the room as abruptly as he entered.
The next day I was met by a team of psychiatrists and psychologists for my final report. They prepared a huge file on me which they handed out to everyone in the meeting. It said I have a mental illness not a physical one. The psychiatrist wouldn’t let me speak at this meeting. He told me any attempts would be ignored. All the evidence pointed to a mental illness where people believe they are really medically ill. He then told me I would need to be started on Effexor an SNRI as it would save my life. He closed by telling me that I could find quacks down the block. (he had their names and numbers) who would tell me I had such things as chronic Lyme or CFS but they were just quacks and I’d be going down a dangerous path by getting involved with that.
I will never forget where this illness can take us and I will never allow such negligence to bring me to hell again.
This patient had a 36 beat per minute increase in her pulse rate, 72 to 108 upon going from lying to standing, with a BP of 90/70 in both positions, and runs of what were probably PSVT, in my office. I wonder how the Mayo Clinic doctor thinks she performed that trick with her anxiety. The only thing he got right was that beta blockers and depression are not good together, though this patient isn’t clinically depressed.
The association between ME/CFS and autonomic dysfunction is unrecognized by the medical profession at large. Even cardiologists who know enough to diagnose POTS are unaware and fail to see it in it’s larger context. There is a whole department dedicated to autonomic dysfunction at Vanderbilt that seems to see CFS as an overlapping confounder to the real work. This condition was largely unknown 30 years ago, except as a fatal genetic disease (Familial Dysautonomia). The first paper in the literature appears in 1993, Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia? Schondorf, and “neurally mediated syncope” first appears in 1989. Why doesn’t anyone wonder what’s going on that a significant percentage of the non-diabetic population has an autonomic neuropathy that was unheard of a couple decades ago? Any epidemiologists want to ponder this one?
- A matched case control study of orthostatic intolerance in children/adolescents with chronic fatigue syndrome. Galland
- Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome. Hoad
- Autonomic nervous system dysfunction in adolescents with postural orthostatic tachycardia syndrome and chronic fatigue syndrome is characterized by attenuated vagal baroreflex and potentiated sympathetic vasomotion. Stewart
- Patterns of orthostatic intolerance: the orthostatic tachycardia syndrome and adolescent chronic fatigue. Stewart
Dr. Stewart was the lead author on this paper documenting that CFS patients hyperventilate during what I call a mini tilt test, which I include in the physical exam when evaluating a new patient. Hypocapnia is a biological marker for orthostatic intolerance in some patients with chronic fatigue syndrome. Natelson. This study documents that there is a problem with hypoxia, stimulating increased minute ventilation (though apparently not increased respiratory rate, at least in this study), despite the fact that oxygen saturation in the blood is normal. Sad that we need to turn ourselves into lab rats, and be subjected to barbaric studies like being strapped to a tilt table to prove what we know full well, that we actually have OI from an organic illness.
And what is the clinical armamentarium? Florinef, licorice, IV saline, electrolyte drinks, maybe DDAVP, beta blockers, midodrine, all imperfect bandaids. Hawthorne, a vascular toner, is a magic herb for some. Ali’s POTS has resolved in recent months with high dose normobaric oxygen ad lib and modified Meyer’s cocktail infusions every week or two. The most bare bones infusion seems effective for her, containing MgCl 400mg, Ascorbic acid 500mg, B-100, pyridoxine 100mg, dexpanthanol 250mg and hydroxocobalamin 5mg. I am not sure that the glutathione push adds anything for her, but we will continue to explore it. After her initial response to the cocktail containing Leucovorin 10mg, she tried oral folinic acid. It had a positive effect initially, but then she thought it might be contributing to sleep disruption and went down, then off. Coincidentally, she felt the need to reduce her Deplin from 15mg to 7.5mg. Her requirement for folic acid derivatives appears to be decreasing with time, as her health improves.
I was interviewed yesterday by a graduate student in communications who is researching gender bias with respect to CFS. We discussed the ignorance and disbelief to which patients, especially female patients, are routinely subjected. I recounted this story to him. In the summer of ’06, I was hospitalized three times for abdominal pain and an inability to eat. I required TPN (total parenteral nutrition) and eventually needed a transfusion and emergency surgery. At one point, as I was near death, Ali was in a different hospital, because she woke up one morning with a paralyzed arm. We were both subjected to involuntary psychiatric evaluations. Why was that necessary? Because we had Lyme Disease? It makes my blood boil to think of it even five years later. If I’m crazy, my doctors drove me to it. There were times that seeking treatment was like signing into a veritable looney bin. With this disease, we must all learn to fly over the cuckoo’s nest.