The psychosomatic approach to medically unexplained symptoms, myalgic encephalomyelitis and chronic fatigue syndrome (MUS/ME/CFS) is critically reviewed using scientific criteria. Based on the 'Biopsychosocial Model', the psychosomatic theory proposes that patients' dysfunctional beliefs, deconditioning and attentional biases cause or make illness worse, disrupt therapies, and lead to preventable deaths. The evidence reviewed suggests that none of these psychosomatic hypotheses is empirically supported. The lack of robust supportive evidence together with the use of fal-lacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and an unwillingness to share data all give the appearance of cargo cult science. The psychosomatic approach needs to be replaced by a scientific, biologically grounded approach to MUS/ME/CFS that can be expected to provide patients with appropriate care and treatments. Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties.

While disability takes many forms, the doctors had much to say about people who use wheelchairs. Some doctors said their office scales could not accommodate wheelchairs, so they had told patients to go to a supermarket, a grain elevator, a cattle processing plant or a zoo to be weighed, or they would tell a new patient the practice was closed.
One said he didn’t think he could legally just refuse to see a patient who has a disability — he had to give the patient an appointment. But, he added, “You have to come up with a solution that this is a small facility, we are not doing justice to you, it is better you would be taken care of in a special facility.”
The doctors also explained why they could be so eager to get rid of these patients, focusing on the shrinking amount of time doctors are allotted to spend with individual patients.
“Seeing patients at a 15-minute clip is absolutely ridiculous,” one doctor said. “To have someone say, ‘Well we’re still going to see those patients with mild to moderate disability in those time frames’ — it’s just unreasonable and it’s unacceptable to me.”

results of a national survey of physicians: only 56% reported that they welcome patients with disabilities to their practice; 36% said that they know “little or nothing” about the ADA; and only 41% were confident that they could provide similar quality of care to patients with disabilities as they could to those without disability.

Patients have a federal right to “request to amend” their medical record. This right is conferred by the Standards for Privacy of Individually Identifiable Health Information, otherwise known as the HIPAA Privacy Rule of 2001 (45 C.F.R. § 164.526).

The provider may deny a patient’s request to amend. In denying the amendment, the provider must provide an explanation to the patient for the denial in plain language and in a timely manner. In this notification, the patient must be given the option to submit a statement of disagreement. The patient must also be given options to further complain, such as the name and telephone number of the health system’s compliance officer and relevant government agencies. If the patient submits a statement of disagreement, then the provider may issue a rebuttal statement.
Recordkeeping is crucial because ignoring a patient’s request to amend the record is a HIPAA violation. The Office for Civil Rights (OCR) has an online complaint portal and a toll-free number to trigger investigations. The OCR is empowered to assign civil money penalties and, with the Department of Justice, to enforce criminal prosecutions to medical providers.
If the record is amended, be sure to note the amendment in the medical record. Providers should never delete any portion of the medical record. Penalties skyrocket if there is evidence of retaliation against the patient. Retaliation could be evident if something derogatory is written about the patient in the chart because of the request to amend the medical record.
The Privacy Rule does not allow the provider to charge a fee to the patient for any work performed to receive, deny, or approve a patient’s request to amend the health record.

Providers have 60 days to respond but may extend another 30 days if needed.

A deaf blind person was denied an ASL interpreter at a medical facility on several occasions, so she had to go elsewhere for care, and SCOTUS ruled against her, saying it’s only discrimination if someone suffers economic harm.

“BMI has been malleable over time in response to the desires of the weight loss industry. In 1998, a committee recommended that the NIH lower the BMI categories, shaving 15-20 pounds off the definition of “healthy/normal weight.” Seven of the nine committee members had direct ties to the weight loss industry. The committee chairman was a former Executive Director and current board member of the Weight Watchers Foundation. Their recommendations gave the weight loss industry about 29 million new customers, literally overnight. Katherine Flegal (one of the two committee members without ties to the weight loss industry) explained that they were pressured to conform to the WHO standard. That standard was created by the International Ob*sity Task Force, which receives funding from Hoffman-La Roche (makers of diet drug Xenical) and Abott Laboratories (makers of diet drug Meridia) and has a primary mission of lobbying governments for pharma companies’ agendas.”

Part 3 of 3

primary aldosteronism, in which one or both adrenal glands, small structures that sit atop the kidneys, overproduce a hormone called aldosterone. Aldosterone increases blood pressure by sending sodium and water into the bloodstream, increasing blood volume. It also lowers potassium

Dear Medical Provider,

You say that you are frustrated. You are angered by my inability to trust you and your treatment recommendations. Your ego/pride is wounded by my explaining my condition to you. Or, maybe, you are one of those rare gems of professionals who genuinely care and are concerned for my well-being, feeling helpless because you want to help and feel that I am hindering your ability to come to my aid. Whatever the reasons for your frustration, I have a message for you:

I have been irreversibly damaged by your profession. It’s a hard truth. The blame does not fall on your shoulders, but you are part of a community that has caused immense trauma that has left a mark and forever changed the person I am. There was a time when I trusted doctors, when the mere mention of a new doctor or hospital visit did not leave me quaking on the floor, battling flashbacks of medical neglect and trauma. The door to my care used to be wide open to all doctors, nurses, PAs, and any others in the medical field who wanted to participate in my care. In fact, I flung that door open with enthusiasm, so hopeful that I would find answers and help for my health.

But over time, that door was abused. Words and accusations flew wildly, knocking out the beautiful front windows on the entrance, leaving me cowering within. And so, ever so slowly, the door began to close. It wasn’t a conscious decision; most days I was not even aware of the sliver of space that got smaller and smaller with each new rock hurled. Until, one day, no one could get in. And I could not get out. A solid barrier stands between us, and you yell at me to tear it down, without ever questioning why it was necessary to build in the first place.

You tell me to trust you; you tell me to open the door, you pound with your fists without stopping to realize that your behavior is only furthering the belief that the barrier is necessary and the only way to keep myself safe. As one of my favorite quotes says, “Stop asking me to trust you while I’m still coughing up water from the last time you let me drown.” I did not become this way overnight. It took several years of neglect and trauma to shape the views, beliefs and fears that lock me inside. It was not one mistake, but a pattern of mistakes, arrogance, and actions that directly endangered my life that have created the guarded human in front of you. I did not ask to become this person; the medical field damaged me. I am learning to heal, but you do not get to judge or dictate a timeline for how I repair what your profession broke.

I did not ask for this trauma. I did not ask to feel like it is safer to die in my house than to get medical treatment in a hospital. I did not ask for not one, but two doctors tell me to my face that they would not give me an epi-pen when I have an allergic reaction because I “have a history of anxiety that you will take into account.” I did not ask to have my throat begin to close up and have an ICU doctor stand over me refusing to give me epi until my nurse yelled at him that I would code if he did not administer it. I did not ask to be literally starving with my body breaking itself down for nutrition only to be held in the hospital for six days with no nutrition because of the assumption that I was faking. I did not ask to fear for my life because of the arrogance and neglect of medical professionals.

My medical PTSD is not a result of the numerous possibly life-threatening situations my health has caused. I have not walked away with trauma from any serious health situation where I was believed, cared for, and validated by medical staff. My trauma is a direct result of the behavior of those taking care of me during my most vulnerable times.

Those patients who are the hardest to treat are the ones who have lost. Lost trust in the world, the people around them, humanity, and themselves as the guilt that comes after is oftentimes unbearable. The thoughts that I should have spoken more loudly, stood my ground, known not to trust you, are deafening. But, the reality of the situation is that I did not need to do anything differently, rather, you just needed to listen to the person who is the expert of their body and their condition.

We are not difficult, we are hurting, scared, and traumatized by the medical industry. It is not your fault, but it is your responsibility to ensure that you never cause your patients the trauma that we have suffered, to ensure that your patients see medical professionals as people who will help them rather than someone they need to protect themselves from. You and I can’t change what happened to me. For better or worse, medical trauma has shaped who I am and how I view the world. But, you and I can work together to heal not only myself, but others who have suffered the same ways that I have.

So, the next time you have a “difficult patient,” remember the experiences that shaped them.

Sincerely,
A pain in the ass patient