Are We Crazy?

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.

And in the UK, patients get “sectioned” so they can be talked out of being ill. Even the comfort of good therapy is denied to patients with a diagnosis that is a pejorative. CBT might in fact be useful if it were about helping patients cope with the reality of their disease, rather than talk them out of their “false illness beliefs” and being so overly focused on their symptoms. Symptoms like being unable to sit up or lift their arms. Or using up a day’s allotment of ATP to go to the bathroom.

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?

In reviewing the paltry literature on the subject, the work of Julian Stewart, at New York Medical College’s Center for Hypotension, stands out. He has an NIH grant to study “whether circulatory problems explain the symptoms and signs of the chronic fatigue syndrome in teenagers”. Next best to figuring out what caused the circulatory problems in the first place.

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.

Boulevard of Broken Dreams
Did you like this? Share it:

36 thoughts on “Are We Crazy?

  1. >I recently had a cardiac cath. and the cardiologist did not properly get the area numb where they enter the artery in the groin. I am on regular narcotic medication because of extreme pain, related to ME.

    Doctors are very predjudiced against anyone on chronic opiate medications. They often believe that they can do whatever they wish to you with little to no additional pain medication. I saw this doctor react when we went over my medication list. He tried to hide it, but I've seen it too many times to not notice the stiffening and change in voice that occurs.

    The pain was excruciating. I told him I was not numb, but he just kept ordering more benzodiazepines per IV. I was crying and moaning loudly, but he looked at me as if I was the problem. He never tried to numb the area again and I endured what could only be called torture at his hands.

    At the end, he announced that I had no blockages and was fine and walked out of the room. The nurse announced that I had been out for most of the procedure and scoffed at me when I told her I had never been anywhere near "out".

    I will not go to another hospital again.

  2. >Thank you as always, Jamie.

    When do we /really/ get pissed off?

    Anonymous: the truth isn't poison.

  3. >Anonymous 9:23 pm I think you have missed the point completely! The point is that there are many such cases out there and it's not just because they are "bad doctors". It goes deeper than that, to the wrong information taught in med school about ME/CFS and the whole misperception of the disease being psychosomatic. I think it's also disturbing that even had the first person of Dr. D-J's post been psychosomatic, that s/he was treated so atrociously by the very people who should care most about his/her well-being. Bad behavior, unethical treatment, and miseducation cannot and will not be ignored and should not be tolerated. Doctors and nurses have a lot of power and most of the time they use it for good. However, when they use their power to abuse or oppress, they need to be held accountable.

  4. >Doctors classifying ME as psychosomatic is a big problem. An even bigger problem is their unquestioning assumption that psychosomatic illnesses exist at all.

    I just quoted this on my own blog, and it's worth repeating. From a clinical psychologist who's been practicing for over 25 years:

    "Physicians have referred many people to me before they had a diagnosis, even doctors who don’t know what else to do for their patients. ALL of them eventually received a medical diagnosis. That’s right. ALL OF THEM."


    I keep an open mind. If there's evidence that emotional stress can cause a disease where no disease existed before (as opposed to stress exacerbating symptoms from an already existing disease, as with ulcers), I'll be happy to consider it. But nobody ever provides evidence beyond "We've ruled out everything we can think of, so it must be in their heads."

  5. >This kind of maltreatment of us is why I'd rather die than go to the hospital or emergency room. It's too bad we're all not well enough to Occupy our hospitals, ERs and the Mayo Clinic in protest of this horrid behavior by medical personnel. It would be validating to put the actual names of the nurses and doctors who are responsible for treating us this way on large signs we could carry so the public and news media could see them. Then we could all chant, "Shame! Shame! Shame!"

  6. >Thank you Jamie. Some time ago I saw a specialist for an ME related issue. He dismissed the notes from my doctor and the results of private tests I had earlier this year showing severe mitochondrial damage. He asked if I had been 'psychologically screened' (his words), said there was 'no cure for ME anyway' (his words again) and 'what do you want to get from this?' (from the appointment with him).

    During the conversation he asked what I did for a living before I was forced to stop. When I told him, the shock on his face was actually worth the trip to his consulting room. I could almost visualize the confusion inside his brain. All he could say was 'but for sure you would have been psychologically assessed as part of your training?'. His response is typical and I have seen it many times over the years. It's like they have a profile in their heads as soon as they see the dreaded ME or cfs letters on your file.
    I used to work in the field of psychology. Working in human rights and child protection, I thought I'd seen my share of human cruelty and abuse. Evidently not. For this doctor, somehow I did not fit the 'making it up/hysterical patient' (because of my previous position in society?) but he could not bring himself to investigate further (as it would have challenged his comfortable view of the world?). He later discharged me without carrying out the tests requested by my doctor.

    The behaviour of a high number of medical and psychology related practitioners with regards to ME patients (and Lyme and others) in the UK is symptomatic of a sick system run by policy makers writing dodgy guidelines. If you are part of that system there is no access to accurate info, no space to research or think outside the box. And dare I say it, there is little time to be in touch with your humanity. The ones that think outside the box are courageous and exceptional. I feel lucky to have met some over the years, they restored my faith in humanity and make encounters with the type described above more bearable.

    Samuel: I note your point about anger. I think we are beginning to see small cracks in the system and things may begin to shift. It's very subtle and there is no space for complacency. We can only keep pushing or holding the ground in our case.

  7. >I have never been fond of hospitals, but since having M.E., I am even more eager to avoid hospitals–and doctors, too, until I know I can trust them. After several painful hospital experiences, I now subscribe to the philosophy of "don't take me to a hospital unless I am bleeding and broken by the side of the road." Unfortunately, that circumstance did actually happen and I had to be hospitalized. In spite of having an excellent orthopedic surgeon, my hospital experience was horrible.

    I think it is a sad state of affairs when the very people who say they are a "caring profession" are the ones who treat us the worst.

    Patricia Carter

  8. >Maybe. The definition of insanity? This entire dialogue has not changed in decades. Go to the ER with a CFS dx and you may as well stamp nutcase on your forehead. CFS is NOT a real disease by medical standards. Do not blame the drs. Patients always fall into this trap. There are people who have symptoms associated with what is called CFS. Depression and mental illnesses are "real" also.

    ME is a real disease IF it is not combined with or subsumed by the CFS garbage. This ME/CFS shell game will not work. We need a valid diagnosis, NOT connected to this construct which is all about fatigue. ME is NOT CFS, beyond the misinformation being cranked out mainly by our so called patient groups, who have always really wanted status quo, mainly to keep themselves in the contests to win $. That's what our so-called advocacy has become.

    But we will no longer even have the "luxury" of nondisclosure if they get away with the code changes as it will make ME and CFS synonymous.

    So to paraphrase the definition, keep doing what you're doing and you get what you got.

  9. >I think that retrovirologists who expect to detect new human gammaretroviruses in the blood of people with ME using unvalidated assays based on an artificial viral sequence are crazy

    That they keep doing the same thing over and over merely confirms my suspicions

  10. >But can they detect retroviruses in ME, CFS, ME/CFS (which is? either/or/ none of the above? There is NO ICD code for ME/CFS so there is no officially recognized diagnosis). Shhh, don't specify or define the terms or cohort and you'll get or not get whatever you want. So you can't really be wrong. Are we crazy?

  11. >I could not keep reading, it was too upsetting. My heart broke for these people. I kept screaming in my head for the patients to yell and demand a stop to the procedures. It is called BATTERY!! ASSAULT!! They taught me that in nursing school. Just because someone has MD or DO after their name does not give them permission to be abusers verbally or physically.

    Once I stood up in an appointment and called an end to it. Didn't the NP do a back step when I asserted myself. She had a NP student with her and even she rolled her eyes at the NP's behavior. Needless to say, I did not go back to her. And I won't continue to earn money for anyone who is not appropriate. Vote with your feet people!

    If we can't advocate for ourselves because we are too tired and sick, then demand to be able to have an advocate with you. Some one who is not afraid to speak up in your defense.

    It is my hope that all of these people have made complaints to the higher ups in these institutions.

    And may they heal from this kind of hurt quickly.


  12. >Many years ago a doctor wrote a sarcastic remark in my record which my GP noticed and alerted me to. The GP told me it was "code" to other doctors. I complained and demanded the comment be removed. The head of the hospital refused because the doctor refused. I was told it was up to the doctor. Now I skip telling the docotrs in hospitals that I have CFS unless they are likely to give me some kind of anesthesia. We carry in both cars my records from Dr. Cheney and his well documented and foot noted letter about how to use anesthesia with a CFS patient. That really gets their attention. Recently a GI doctor, after reading the letter, told me he would have an anesthesiologist with him when he did the procedure. He said, "Doctors often get letters similar to this, which we pay no attention to, but one written from a doctor who is obviously an expert and who documents what he is advising gives us cause to pause".

    Jana Jagoe

  13. >Every doctor/psychiatrist/nurse/physio etc etc who has met people with M.E. and dismissed them, ignored them, belittled them, abused them, neglected them and JUST DAMN WELL NOT LISTENED TO THEM , choosing to believe their own preconceived, uninformed, outdated beliefs about this illness instead, should be made accountable when the full undeniable truth finally emerges about this illness – they won't be of course.
    Who else (in their profession)would be allowed to make such basic and glaringly obvious mistakes and not be suspended or sacked or investigated? I used to teach and would've been sacked outright, had I been that incompetent and quite rightly so!!
    How can it be, that doctors cannot distinguish between a physical illness and a mental one? What other horrific mistakes are they making day-to-day if they are this incompetent?
    It's the sheer arrogance of the medical profession that astonishes me. I am a doctor , so therefore I am right – you are only a doctor, YES ONLY A DOCTOR!! You are a mere mortal like the rest of us. Too many egos and too much pompousness, big ideas of self-importance, that's what it is.
    What will Wessely do when the truth comes out? CARRY ON WORKING AFTER MAKING SUCH A HUGE MISTAKE THAT HAS BADLY AFFECTED , IF NOT DESTROYED AND EVEN COST THE LIVES OF SO MANY? OF COURSE HE WILL!! It's the 'old boys' network' in Britain, I tell you now. HE SHOULD BE SACKED AND STRIPPED OF HIS QUALIFICATIONS BECAUSE THEY AREN'T WORTH THE PAPER THEY ARE WRITTEN ON, quite obviously. He should be rendered completely unemployable, WHO WOULD EMPLOY SOMEONE WHO WAS THAT INEFFICIENT AND HAD MADE SUCH HUGE MISTAKES? The Britsh government of course!! Sickening, that's what it is – makes me sick to the stomach.
    I am not naturally a bitter or angry person but this takes the proverbial and we must never forget such treatment, ever.

  14. >this is from Don Weitz

    Institutional psychiatrists at McLean Hospital (a private psychiatric hospital near Boston) once labeled me "schizophrenic,” but I've always rejected that label and "mental illness.” They're myths and lies, pseudo-medical labels that fraudulently pathologize dissident conduct and spiritual or mystical experiences as "mental disorders.” I also flatly reject the 400 other unscientific and stigmatizing labels and lies in psychiatry's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Like the Malleus Maleficarum, an official manual used during The Inquisition to identify and burn heretics and witches, the DSM is psychiatry's manual of moral judgements and character assassinations masquerading as medical diagnoses. The DSM labels are used to target, forcibly treat, lock up, and get rid of people who appear crazy, mad or different from most of us. Once psychiatrists label you "mentally ill,” "psychotic" or "schizophrenic" (today's heretics and witches), you're targeted for forced drugging, electroshock, hi-risk experiments, incarceration, homelessness – sometimes death.

    A diagnosis of CFS is in reality a moral judgement and character assasination used by many members of the medical profession to justify their neglegent treatment and overt abuse of people given to people given this diagnosis

    This highly resembles the treatment dished out to people with MS when the psychiatric profession were successful in labelling the disease as hysterical paralysis and gay people when psychiatrists successfully labelled such people as having a mental illness and being deviants and morally corrupt

    And the band plays on!

  15. >I have almost stopped participating in the discussions of this illness because of the number of doctors and nurses ("medical professionals") that excoriate you for encouraging our deluded belief that we are sick. I have had to come to grips with the fact that many, indeed most, medical pros barely skated to their graduations, and the ones who most doubt their own abilities tend to be the most vociferous. A special ring of hell is reserved for those few that enjoy the pain and discomfort they cause patients in their courses of "treatment". Every time a "medical professional" excoriates you for assuming our intelligence and ability to understand the minutia of our illness, I want to spit. The only people worse are those that scorn you for "sharing with lay persons" the discussions in your blog. Oh yeah – anon at 6:24am – what "cfs garbage"? That elitist blather really gets under my skin – we know what we have, even if there is no acronym that suffices.

  16. >Why is the Lipkin multi lab study going ahead?

    None of the labs taking part are using validated assays. They all failed in the blood working group. And Mikovits and Ruscetti are not taking part in study.

    We now know the reason for the negative studies. Looking for VP62 and not the viruses discovered in Lombardi et al. and optimising assays to a synthetic virus floating freely in a blood sample and not an integrated virus that integrates into complex structures formed by CpG islands.

    So the results are predictable and there is no reason to conduct the study. When is it being cancelled?

  17. >It's not just CFS. Our nephew died from a ruptured heart valve because a triage nurse decided he was on drugs. She left him sitting in the waitung room until he fell to the floor with his legs paralysed. She did thisin spite of the fact his doctor had written to admit him because his heart was not okay.

    My husband got mono at age forty. His doctor decided since one test was negative it must be depressed. Never mind he was running a fever and got so sick he couldn't walk. He was put on Prozac. That night he was up all night hallucinating. A friend told us there was another test for mono. We had to ask the doctor to run that.

    I keep asking why I know more than doctors when I am just a sixth grade teacher? I have to add that Dr. D-J knows more than I do.

  18. >I've been shocked to hear about the terrible experiences many CFS/ME patients have endured. In contrast, my experiences with my internist, two neurologists, and an integrative medicine doctor have been entirely positive, in that all were involved in my diagnosis of CFS/ME, took me completely seriously, and have done their best to help me. I've had two trips to the emergency room in the last two years – symptom-related – and was treated kindly and professionally both times.

  19. >These stories are awful, though not surprising. Anyone who is interested might look up the history of MS. MS patients were frequently put into a psych ward for "hysterical paralysis!" When some physicians don't know what is wrong with a patient, many tend to blame the patient and tell them, "It's all in your head."

    I, fortunately, have had understanding physicians who have done as much as they can to help me. I suffered the monetary abuse of two "quacks." One even wrote about me in a book about CFS not bothering to cover my identity and proclaimed that he "cured" me even though he knew I was still very sick.

    Sharon D

  20. >Those who tell their stories in here are preaching to the choir. We all get it. It would be best to preach the ones with the ear muffs…

  21. >I've been lucky with my basic doctor and a few others throughout the years.

    However, when having to deal with young doctors in ER's and in Orthopedics, and a neurologist, I've been condescended to, treated arrogantly, not listened to.

    It's also a male doctor's attitude to woman patient kind of thing. But once a woman doctor screamed at me over the phone when I was having a neurological reaction to some medication, which left me unable to move my arm for a month.

    My internist understood.

    So many hassles, so much arrogance, I don't even want to think about it.

    And Orthopedics? I had to tell a woman physician's assistant once to keep an Orthopedic resident out of my room because he had caused an enormous amount of pain — and then lectured me about pain — while he was wrongly setting my broken ankle, then had to reset it.

  22. >We are not preaching to the choir. We are sharing our stories with one another in a supportive and understanding environment and it makes us feel better and not alone :) You never know who is reading this blog, so we should keep our experiences coming. Many whispers make a loud voice and from small acorns, grow mighty Oaks.

  23. >I am anonymous patient number 2 who shared some of my experiences in this blog. I just wanted to thank those who left supportive and kind feedback. We are all stronger than we even know :)

  24. >"CBT might in fact be useful if it were about helping patients cope with the reality of their disease, rather than talk them out of their "false illness beliefs" and being so overly focused on their symptoms."

    If CBT wasn't about eliminating false (illness) beliefs then it wouldn't be CBT, would it?

    Supportive counseling is fine and often necessary (long over due). CBT for ME is neglect concealed by abuse.

  25. >I must add that I took my daughter to the ER after she had ingested a handful of pills hoping to put an end to her pain. No one seemed concerned at all, and we were left to wait without any intervention while my daughter struggled to stay awake. That abuse alone was enough for me to vow never to take her there again. She already felt helpless. This added "nobody cares" to her burden. Many years later I took her to another ER when her legs and torso had broken out in such bad eczema that she lookd scalded in those areas. We were looking for relief of pain and itching. She was put in a hallway on a cot and ignored; then told to see a dermatologist the next day. The dermatologist said the RX we were given would not have done anything to help. I have told her to avoid being taken to an ER if at all possible.

    But recently she had to have surgery. At the beginning of the exam, I gave the surgeon a list of symptoms and some of the latest research, not stating the diagnosis as fact but as a possibility–basically an immune system dysfunction. He was interested and took special measures with the anesthesia and recovery issues. He also told her as soon as he met her "I am so sorry you have to deal with such a disabling condition."

    We hate going to new doctors or having to explain what the problems are, but we look for individuals who have some openness or curiosity and attitude of learning and have found a few. I keep hoping that in time more doctors will see the doctor/patient relationship as a collaboration toward better health in the same way teachers and parents who work together for the benefit of the pupil provide the best education.

    BTW, the psychiatrists have been the worst doctors to deal with. After dealing with a number of them, we have stuck with the one who takes no insurance but listens, is interested in whatever research I bring him, and says "I can't fix your chronic illness, but I can help you with depression " (which existed before the onslaught of the illness).

    Having been the advocate for my daughter and my parents and my husband through many surgeries and doctors' visits, I have low opinions of U.S. health care in general, including doctors, nurses, hospitals, ERs, nursing homes, insurance, Medicare, etc. Yet, in every situation I look for the individual(s) who is knowledgable and who is responsive, and I almost always find one.

    Peggy in Texas

  26. >Dear All and Dr. Jamie!
    Thankyou Jamie, that we have one Dr. and one place we can talk about all terribles experinces at hospitals and Dr.visits. It moved me what I have read and tear are near, because I have the same experinses. I want to told them and share them (because it is only my husband who know some of the terribles, I will not tell them all to my lovly husband, I want not he shall have more pains as possible). But my brain are to slow to translate it from danish to english. But it heals to read this and to put words on our pain, -as we have as a secret in our hearts. It is good for me to hear that it is not only me who is "crazy", sometimes I belived that I was crazy, -because the Dr. "are right", -I said to my selv. But the internet has help me and specielt this blog, to read: we have the same story to tell! It lifted my head up!!!
    With Love Christina

  27. >The second patient's story is odd – ablation is reserved for the more severe cases of supraventricular tachycardia and atrial flutter that are either causing other symptoms or have potential to cause damage, such as heart failure.

    While what the patient described is typical of the procedure, prep is not done in the OR (unless the Mayo clinic does things differently) but shaving is necessary for any surgical procedure to reduce infection. In this case genital shaving is necessary because the catheter is typically inserted in the femoral vein near the groin.

    The arrhythmia needs to be induced in order for the misfiring part of the heart to be identified so it can be damaged. If the wrong part of the hard is damaged, the patient risks need a pace maker.

    It sounds like the patient was confused about what was going to happen during her ablation procedure – perhaps she was not adequately informed about the necessary steps before, during, and after the surgery? Her parents must have signed consent forms, and should have told the cardiologists about her sensitivity to benzos. If there had been "abuse", surely they would be suing.

    Regardless, she *was* showing extreme anxiety and the surgery should have been stopped. However, given the behavior that she admitted to during a common surgical procedure, is it any surprise that they labeled her as anxious?

    ME's symptoms are too often brushed off and pinned as pyschosomatic. It is a horrible problem with consquences that bring me to tears. However, this example seems to have nothing to do with ME, and more to do with an ill-prepared teenager frightened of the typical experiences of surgery.

  28. >I think vindication is coming…SOON! There are a host of young people who are now actively studying this illness because of what it has done to their families. They do not have the same misgivings or characteristic assumptions about this illness. They see it for what it is–devastating. Plus, let us not forget that there are those among us who make vows to help the community in whatever ways possible. Broken pieces that we are, we have some insight into both human capacity and limitation.

    And…just for the record…CBT is not our enemy in the least. Is it used in a wrong fashion every day? Absolutely. But, Dr. JDJ is right. I would want to say that what CBT does well, when used correctly, is combat cognitive distortions (e.g. "all or nothing thinking"), faulty logic, and negative schemas. When a treatment modality is used in the proper way (with someone who wants to be there), by a properly trained professional,…it can help. I am NOT talking about trying to convince someone who is ill that they are not. In CBT, I would argue that you might do quite the opposite–which is why it MAY be helpful to some. A brief example: Who among us has not felt at least a twinge of guilt or shame or worthlessness because of the illness and what it has done to us…our relationships…our bank accounts…our ability to provide…our ability to work…our ability to GO and DO? Now someone using CBT in a correct way might look at those constellations of feelings and hint at the fact that we still maintain our inherent value, whether or not we can DO anything. In this example, CBT would be to help someone recapture the truth about their worth and reestablish a sense of innate value. If you have been beaten down by this illness, it stands to reason that having someone truly listen and respond with kindness and unconditional positive regard might have some beneficial outcome. That does not suggest that ME/CFS/CFIDS is a "mental illness." I take it to mean that it is a potential adjunct therapy that may help a subset of people, just as rituximab, ribose, or valcyte may offer help for some others. So far, there is no one cure. There are only things that help, don't help, and make far worse.

  29. >XMRV or ZMRV – that is the question for ME

    The term XMRV has become problematic, and is leading to a great deal of confusion among scientists, the media and the lay public alike. Robert Silverman named the virus he described XMRV because in some respects its proviral DNA sequence was very similar to other retroviruses which could not infect mice. This is not a scientific description as the virus was later discovered to be a hybrid of two different classes of retrovirus.

    We can call this virus SXMRV when S stands for a subjective label. In scientific terms a xenotropic murine related retrovirus is a name given to indicate that such a virus contains DNA sequences indicating that it cannot infect mice. A number of different xenotropic murine related retroviruses have been detected in the human population. We can called these OXMRV because in an objective sense they are XMRV's. We have yet more confusion because Drs Coffin and Pathak have proposed that one particular SXMRV sequence is a laboratory artifact. Although this hypothesis needs to be confirmed in independent studies many scientists find the suggestion plausible. We will call this CPXMRV, the CP standing for Coffin and Pathak.

    The situation is even more complicated because the virus or viruses detected in the blood of patients with ME are now nothing to do with XMRV in any of the multiple meanings of the term. These viruses are animal viruses which have now gained the ability to infect and replicate in humans very much like HIV, once found exclusively in primates, has done.

    To avoid confusion these viruses are best described as ZMRV where Z stands for zoonotic indicating that the viruses have their origin in other animals. This is not to say they may not have come directly from mice, but that the jump into humans may not have been directly from mice. Thus we have XMRVs in people with prostate cancer and ZMRVs in people with a neuroimmune disease often labelled as ME.

  30. >I don't think CBT is what's needed per se. I think therapy, counseling, speaking to people who have experience in dealing with people with severe and chronic illnesses is helpful — even a good support group where people with like experiences can exchange symptoms, feelings, frustrations, suggestions to help make our lives easier and so on.

    When I think of CBT, I think of the enforced exercise regimen as proposed by the CFIDS-deniers in Britain, those who stymie sufferers from getting good medical care and disability benefits.

    When that is raised as any type of "treatment" it is offensive and hurtful to people who can't stand up to make meals, or sit at a computer for a long time, can't go outside to mail letters or go to the grocery story a block away – and at times, can't walk from one room to the other in one's residence.

  31. >'It makes my blood boil to think of it even five years later. If I'm crazy, my doctors drove me to it.'

    Jamie, is it possible to heal when one is so full of anger?

  32. >Johnny,

    I'm doing really well, personally. It's the big picture that is the problem.



    " Lobbyist/AttorneyWhittemore has lobbied on behalf of industries including the Nevada casinos, liquor, and tobacco.[3] He has been called one of the most powerful men in Nevada, the most powerful casino lobbyist, and "the Lance Burton" of lobbying.[5] State Senator William Hernstadt attributes Whittemore's success to his ability to command attention and respect, remarking, "when Harvey Whittemore speaks, the Nevada Senate listens".[1] Whittemore has also lobbied for his own ventures, both business and non-profit"

    LAST STATEMENT ON HIM:The Whittemores contributed and raised funds for the institute in response to what they felt was a lack of action on chronic fatigue syndrome from the federal government.[4] They also believed, along with Peterson, that CFS must be caused by a virus. The Whittemores state that the "only treatment with any effects" was an
    " **experimental antiviral drug** administered by Dr. Peterson."




Comments are closed.