Wednesday, May 22, 2019

Comments by Alanamous

Showing 4 of 4 comments.

  • I mentioned elsewhere that this isn’t the first time The Lancet has published erroneous information and refused to retract it. I had a chance to do a quick search and found the issue is actually much larger than I realized. I only mentioned the issue I was personally aware of since it affects me, the publishing of a falsified study which proclaims that Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) were proven to be effective treatments for Myalgic Encephalopathy (ME/CFS). In fact, the research which was part of what is referred to as the PACE trails did NOT show ANY patients improving and contrarily most worsened with GET. The findings of the PACE trial were published in The Lancet and have been the basis of the ONLY recommended and approved treatment for patients with ME/CFS worldwide.

    Researching the illness on government websites, Wiki, in medical textbooks, an in general turns up this misinformation which is severely detrimental to patients. This has prevented any research dollars being allocated towards the illness which is actually terminal in some patients, let alone any research for hundreds of millions of patients who have been desperate for help and a cure for decades. There are so few specialists and most physicians are so grossly misinformed that they treat the condition as though it is a mental condition. I don’t think I have to explain to most of you how poorly people are treated who are thought to have any sort of mental condition, especially when physicians are convinced that the patient is causing the debilitating symptoms themselves.

    I did a quick search this morning on Google as I was sure there must be other controversies associated with The Lancet if the two of these existed. Sure enough, there are a whole string of them which have been going on for decades. Furthermore, it seems that they have previously stated they would publish a retraction but failed to do so. I will continue to hope for your sake as well as the sake of everyone who could be affected by their cavalier attitude and inability to see people as human beings that they do indeed at least print the one tiny little retraction. However, I’m not holding my breath.

  • I’m not sure if I managed to share this information about another Lancet lie which they have been refusing to rescind for awhile now. It has taken the ME/CFS community years of fighting first of all to expose the cover-up of misinformation. But as in the case written about here, the misinformation has been broadcast so far and wide that it has caused extensive damage of immense proportions. I know it sounds dramatic when I say this, but it really has caused death, deterioration and debilitation which is immeasurable for countless patients.

    Here’s a bread crumb https://www.healthrising.org/forums/threads/new-york-times-opinion-piece-slams-pace-trial-and-lancet.5328/

    But, if for some reason links aren’t able to be posted in the comments here, I implore you to search the terms Lancet, PACE, ME/CFS, NY TIMES

  • Regardless of diagnosis, recommendation, terminology, and/or any institution or organization which acts in an authoritative role acting as a service for the public, then any individual representing such an entity should not in any way take away another individual’s rights to freely make decisions about his/her body, mind and soul as long as those decisions do not interfere with, damage or harm the rights of another person. Yet so many people seem to think that they are more intelligent, more powerful, more responsible, and/or more deserving in some way to make decisions for other people. Other people can make recommendations, suggestions, advisements and such, however they are not executive guardians, masters, promulgators, or in any other way the administrators over anybody else’s life. And furthermore, those who feel as though the severity of consequences for not adhering to the guidance and/or decisions of their misguided attempts at control is a matter of life and potentially death that is the only part in which they are correct. However, their perception is off in that the matter is that whence somebody loses the right to their own life decisions, they have lost their own life. If a person doesn’t have a right to live their life and pursue their beliefs then there isn’t a value in living inside a shell of somebody else’s beliefs.

    And sadly, in the medical community, so many will choose the easiest explanation for them, that the patient is not what they claim to be, and instead of helping they pass the buck. It’s far more work to investigate, research, and figure out what is going on with a patient than it is to make a simple statement and pass them off to somebody else who will mistreat and abuse, and collect their paycheck at the end of the day and think nothing further of anybody whom they saw in their quest to pay their bills. But why would there be so many liars? Even if everybody were psychotic, or belligerent what reasoning do patients have for going to see physicians and wasting their time? Who wants to spend money and time going to see somebody who is going to ignore them, treat them like a liar and either try to put them on antidepressants or treat them like a druggie? Illicit drugs are much less expensive and it’s much easier/cheaper to get abused anywhere/everywhere else. Dr’s and attorneys have the biggest egos, but the smallest brains sometimes.

  • I thought I had successfully navigated unfriendly, uninformed waters to avoid the sort of physician who doesn’t believe in things such as fibromyalgia pain, who are audacious enough to state it’s psychosomatic, or who are just so jaded that they are apt to find any way to dismiss a patient they don’t know how to treat. I haven’t even turned 40 years old yet, but I’ve been dealing with chronic illness and doing the doctor dance for the past 15 years. And I just ran into my second physician with an abhorrent attitude towards me and my illness. A physican’s assistant stated to me, “It’s all in your head” and even tapped her head for emphasis, and refused to manage my pain. I was so shocked that I inadvertently stated in a flat tone, “That’s f-ing ridiculous.” However, I said the actual curse word.

    She refused to address my pain issue despite no history of drug dependency. And my regular doctor, who unfortunately wasn’t available, had normally and recently prescribed adequate pain relief for me. We had just decided to try an alternate medication which was not working and I wanted to go back to my original medication which did work, it was just only effective for 24 hours vs the 48-72 hours the manufacturer indicated. However, I had another medication I was able to use with it, so it wasn’t really an issue. I had just been reporting how it worked for me to my Dr. But when he said I should try something else, I figured I would be considered a bad patient for not trying what he suggested. And I had also figured if the alternate medication didn’t work, which it didn’t, I would be able to switch back to the original.

    I contacted a patient care advocate for assistance in the matter, as I didn’t feel I could wait the full month to see my regular Doctor. The advocate passed my email off to the practice director. I didn’t receive any response. I ended up having to wait the month for my appointment. When I showed up for my appointment, I found out I had been cancelled. The director wrote a letter stating as such the day before my appointment, but didn’t actually send it until one week after my appointment. The reason stated was because I had cursed at the staff member. Technically, I hadn’t cursed AT her, and regardless, that wasn’t anywhere in the rules or guidelines which I had signed when I first joined the clinic. And if it had been, the rule would have included maintaining a therapeutic relationship and professional conduct which the physician’s assistant clearly broke first and I was merely deflecting the attack which she initiated. It was a human reaction, and just an unfortunate choice of words, nothing more. Their response to cancel me was cruel punishment and is effectively pulling the plug on my life support and kicking me out of the door. I have chronic fatigue syndrome, fibromyalgia and chronic epstein-barr virus and they prescribe several of my maintenance medications for me. It’s criminally negligent to just drop me without enough time to be able to procure another doctor who is able to take over the prescriptions and manage my care.

    Then, when I attempted to find another physician, I set up for a representative to contact me to set up an appointment from a specialist, and I was called back only to be told that I needed was a referral by my doctor, even though their literature stated they only needed referrals if required by insurance. My insurance doesn’t require referrals. When I contacted my PCP, their office stated that I don’t get to decide which specialist I see, they decide, and they don’t want me to see a rheumatologist as I had chosen to see, they want me to see a pain management specialist again, and they only refer to one. So, I wouldn’t be able to call around to find whomever would be able to get me in quickly either. They said they would set up the appointment and then contact me. This was a week ago and I haven’t heard back and my medications will run out in less than two weeks. It seems as though nobody seems to care that I’ll be completely unable to care for myself again, not to mention how it will feel with the pain, fatigue, not sleeping, … But, it’s all in my head, so I should just get over it.