The hidden story behind lower life expectancy

http://thehill.com/opinion/healthcare/368165-the-hidden-story-behind-lower-life-expectancy

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Farewell – A Last Post from Anne Örtegren

http://lobel.nu/anne.html

Nobody can say that I didn’t put up enough of a fight.

For 16 years I have battled increasingly severe ME/CFS. My condition has steadily deteriorated and new additional medical problems have regularly appeared, making it ever more difficult to endure and make it through the day (and night).

Throughout this time, I have invested almost every bit of my tiny energy in the fight for treatment for us ME/CFS patients. Severely ill, I have advocated from my bedroom for research and establishment of biomedical ME/CFS clinics to get us proper health care. All the while, I have worked hard to find something which would improve my own health. I have researched all possible treatment options, got in contact with international experts and methodically tried out every medication, supplement and regimen suggested.

Sadly, for all the work done, we still don’t have adequately sized specialized biomedical care for ME/CFS patients here in Stockholm, Sweden – or hardly anywhere on the planet. We still don’t have in-patient hospital units adapted to the needs of the severely ill ME/CFS patients. Funding levels for biomedical ME/CFS research remain ridiculously low in all countries and the erroneous psychosocial model which has caused me and others so much harm is still making headway.

And sadly, for me personally things have gone from bad to worse to unbearable. I am now mostly bedbound and constantly tortured by ME/CFS symptoms. I also suffer greatly from a number of additional medical problems, the most severe being a systematic hyper-reactivity in the form of burning skin combined with an immunological/allergic reaction. This is triggered by so many things that it has become impossible to create an adapted environment. Some of you have followed my struggle to find clothes and bed linen I can tolerate. Lately, I am simply running out. I no longer have clothes I can wear without my skin “burning up” and my body going into an allergic state.

This means I no longer see a way out from this solitary ME/CFS prison and its constant torture. I can no longer even do damage control, and my body is at the end of its rope. Therefore, I have gone through a long and thorough process involving several medical assessments to be able to choose a peaceful way out: I have received a preliminary green light for accompanied suicide through a clinic in Switzerland.

When you read this I am at rest, free from suffering at last. I have written this post to explain why I had to take this drastic step. Many ME/CFS patients have found it necessary to make the same decision, and I want to speak up for us, as I think my reasons may be similar to those of many others with the same sad destiny.

These reasons can be summed up in three headers: unbearable suffering; no realistic way out of the suffering; and the lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs.

Important note

Before I write more about these reasons, I want to stress something important. As for most other ME/CFS patients who have chosen suicide, depression is not the cause of my choice. Though I have been suffering massively for many years, I am not depressed. I still have all my will and my motivation. I still laugh and see the funny side of things, I still enjoy doing whatever small activities I can manage. I am still hugely interested in the world around me – my loved ones and all that goes on in their lives, the society, the world (what is happening in human rights issues? how can we solve the climate change crisis?) During these 16 years, I have never felt any lack of motivation. On the contrary, I have consistently fought for solutions with the goal to get myself better and help all ME/CFS patients get better. There are so many things I want to do, I have a lot to live for. If I could only regain some functioning, quieten down the torture a bit and be able to tolerate clothes and a normal environment, I have such a long list of things I would love to do with my life!

Three main reasons

So depression is not the reason for my decision to terminate my life. The reasons are the following:

1. Unbearable suffering
Many of us severely ill ME/CFS patients are hovering at the border of unbearable suffering. We are constantly plagued by intense symptoms, we endure high-impact every-minute physical suffering 24 hours a day, year after year. I see it as a prison sentence with torture. I am homebound and mostly bedbound – there is the prison. I constantly suffer from excruciating symptoms: The worst flu you ever had. Sore throat, bronchi hurting with every breath. Complete exhaustion, almost zero energy, a body that weighs a tonne and sometimes won’t even move. Muscle weakness, dizziness, great difficulties standing up. Sensory overload causing severe suffering from the brain and nervous system. Massive pain in muscles, painful inflammations in muscle attachments. Intensely burning skin. A feeling of having been run over by a bus, twice, with every cell screaming. This has got to be called torture.

It would be easier to handle if there were breaks, breathing spaces. But with severe ME/CFS there is no minute during the day when one is comfortable. My body is a war zone with constant firing attacks. There is no rest, no respite. Every move of every day is a mountain-climb. Every night is a challenge, since there is no easy sleep to rescue me from the torture. I always just have to try to get through the night. And then get through the next day.

It would also be easier if there were distractions. Like many patients with severe ME/CFS I am unable to listen to music, radio, podcasts or audio books, or to watch TV. I can only read for short bouts of time, and use the computer for even shorter moments. I am too ill to manage more than rare visits or phone calls from my family and friends, and sadly unable to live with someone. This solitary confinement aspect of ME/CFS is devastating and it is understandable that ME/CFS has been described as the “living death disease”.

For me personally, the situation has turned into an emergency not least due to my horrific symptom of burning skin linked to immunological/allergic reactions. This appeared six years into my ME/CFS, when I was struck by what seemed like a complete collapse of the bodily systems controlling immune system, allergic pathways, temperature control, skin and peripheral nerves. I had long had trouble with urticaria, hyperreactive skin and allergies, but at this point a violent reaction occurred and my skin completely lost tolerance. I started having massively burning skin, severe urticaria and constant cold sweats and shivers (these reactions reminded me of the first stages of the anaphylactic shock I once had, then due to heat allergy).

Since then, for ten long years, my skin has been burning. It is an intense pain. I have been unable to tolerate almost all kinds of clothes and bed linen as well as heat, sun, chemicals and other everyday things. These all trigger the burning skin and the freezing/shivering reaction into a state of extreme pain and suffering. Imagine being badly sunburnt and then being forced to live under a constant scalding sun – no relief in sight.

At first I managed to find a certain textile fabric which I could tolerate, but then this went out of production, and in spite of years of negotiations with the textile industry it has, strangely, proven impossible to recreate that specific weave. This has meant that as my clothes have been wearing out, I have been approaching the point where I will no longer have clothes and bed linen that are tolerable to my skin. It has also become increasingly difficult to adapt the rest of my living environment so as to not trigger the reaction and worsen the symptoms. Now that I am running out of clothes and sheets, ahead of me has lain a situation with constant burning skin and an allergic state of shivering/cold sweats and massive suffering. This would have been absolutely unbearable.

For 16 years I have had to manage an ever-increasing load of suffering and problems. They now add up to a situation which is simply no longer sustainable.

2. No realistic way out of the suffering
A very important factor is the lack of realistic hope for relief in the future. It is possible for a person to bear a lot of suffering, as long as it is time-limited. But the combination of massive suffering and a lack of rational hope for remission or recovery is devastating.

Think about the temporary agony of a violent case of gastric flu. Picture how you are feeling those horrible days when you are lying on the bathroom floor between attacks of diarrhoea and vomiting. This is something we all have to live through at times, but we know it will be over in a few days. If someone told you at that point: “you will have to live with this for the rest of your life”, I am sure you would agree that it wouldn’t feel feasible. It is unimaginable to cope with a whole life with the body in that insufferable state every day, year after year. The level of unbearableness in severe ME/CFS is the same.

If we knew there were relief on the horizon, it would be possible to endure severe ME/CFS and all the additional medical problems, even for a long time, I think. The point is that there has to be a limit, the suffering must not feel endless.

One vital aspect here is of course that patients need to feel that the ME/CFS field is being taken forward. Sadly, we haven’t been granted this feeling – see my previous blogs relating to this here and here.

Another imperative issue is the drug intolerance that I and many others with ME/CFS suffer from. I have tried every possible treatment, but most of them have just given me side-effects, many of which have been irreversible. My stomach has become increasingly dysfunctional, so for the past few years any new drugs have caused immediate diarrhoea. One supplement triggered massive inflammation in my entire urinary tract, which has since persisted. The list of such occurrences of major deterioration caused by different drugs/treatments is long, and with time my reactions have become increasingly violent. I now have to conclude that my sensitivity to medication is so severe that realistically it is very hard for me to tolerate drugs or supplements.

This has two crucial meanings for many of us severely ill ME/CFS patients: There is no way of relieving our symptoms. And even if treatments appear in the future, with our sensitivity of medication any drug will carry a great risk of irreversible side-effects producing even more suffering. This means that even in the case of a real effort finally being made to bring biomedical research into ME/CFS up to levels on par with that of other diseases, and possible treatments being made accessible, for some of us it is unlikely that we would be able to benefit. Considering our extreme sensitivity to medication, one could say it’s hard to have realistic hope of recovery or relief for us.

In the past couple of years I, being desperate, have challenged the massive side-effect risk and tried one of the treatments being researched in regards to ME/CFS. But I received it late in the disease process, and it was a gamble. I needed it to have an almost miraculous effect: a quick positive response which eliminated many symptoms – most of all I needed it to stop my skin from burning and reacting, so I could tolerate the clothes and bed linen produced today. I have been quickly running out of clothes and sheets, so I was gambling with high odds for a quick and extensive response. Sadly, I wasn’t a responder. I have also tried medication for Mast Cell Activation Disorder and a low-histamine diet, but my burning skin hasn’t abated. Since I am now running out of clothes and sheets, all that was before me was constant burning hell.

3. The lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs
The third factor is the insight that the risk for further deterioration and increased suffering is high.

Many of us severely ill ME/CFS patients are already in a situation which is unbearable. On top of this, it is very likely that in the future things will get even worse. If we look at some of our symptoms in isolation, examples in my case could be my back and neck pain, we would need to strengthen muscles to prevent them from getting worse. But for all ME/CFS patients, the characteristic symptom of Post-Exertional Malaise (PEM) with flare-ups of our disease when we attempt even small activities, is hugely problematic. Whenever we try to ignore the PEM issue and push through, we immediately crash and become much sicker. We might go from being able to at least get up and eat, to being completely bedbound, until the PEM has subsided. Sometimes, it doesn’t subside, and we find ourselves irreversibly deteriorated, at a new, even lower baseline level, with no way of improving.

PEM is not something that you can work around.

For me, new medical complications also continue to arise, and I have no way of amending them. I already need surgery for one existing problem, and it is likely that it will be needed for other issues in the future, but surgery or hospital care is not feasible for several reasons:

One is that my body seems to lack repairing mechanisms. Previous biopsies have not healed properly, so my doctor is doubtful about my ability to recover after surgery.

Another, more general and hugely critical, is that with severe ME/CFS it is impossible to tolerate normal hospital care. For ME/CFS patients the sensory overload problem and the extremely low energy levels mean that a normal hospital environment causes major deterioration. The sensory input that comes with shared rooms, people coming and going, bright lights, noise, etc, escalates our disease. We are already in such fragile states that a push in the wrong direction is catastrophic. For me, with my burning skin issue, there is also the issue of not tolerating the mattresses, pillows, textile fabrics, etc used in a hospital.

Just imagine the effects of a hospital stay for me: It would trigger my already severe ME/CFS into new depths – likely I would become completely bedbound and unable to tolerate any light or noise. The skin hyperreactivity would, within a few hours, trigger my body into an insufferable state of burning skin and agonizing immune-allergic reactions, which would then be impossible to reverse. My family, my doctor and I agree: I must never be admitted to a hospital, since there is no end to how much worse that would make me.

Many ME/CFS patients have experienced irreversible deterioration due to hospitalization. We also know that the understanding of ME/CFS is extremely low or non-existent in most hospitals, and we hear about ME/CFS patients being forced into environments or activities which make them much worse. I am aware of only two places in the world with specially adjusted hospital units for severe ME/CFS, Oslo, Norway, and Gold Coast, Australia. We would need such units in every city around the globe.

It is extreme to be this severely ill, have so many medical complications arise continually and know this: There is no feasible access to hospital care for me. There are no tolerable medications to use when things get worse or other medical problems set in. As a severely ill ME/CFS patient I have no safety net at all. There is simply no end to how bad things can get with severe ME/CFS.

Coping skills – important but not enough
I realize that when people hear about my decision to terminate my life, they will wonder about my coping skills. I have written about this before and I want to mention the issue here too:

While it was extremely hard at the beginning to accept chronic illness, I have over the years developed a large degree of acceptance and pretty good coping skills. I have learnt to accept tight limits and appreciate small qualities of life. I have learnt to cope with massive amounts of pain and suffering and still find bright spots. With the level of acceptance I have come to now, I would have been content even with relatively small improvements and a very limited life. If, hypothetically, the physical suffering could be taken out of the equation, I would have been able to live contentedly even though my life continued to be restricted to my small apartment and include very little activity. Unlike most people I could find such a tiny life bearable and even happy. But I am not able to cope with these high levels of constant physical suffering.

In short, to sum up my level of acceptance as well as my limit: I can take the prison and the extreme limitations – but I can no longer take the torture. And I cannot live with clothes that constantly trigger my burning skin.

Not alone – and not a rash decision
In spite of being unable to see friends or family for more than rare and brief visits, and in spite of having limited capacity for phone conversations, I still have a circle of loved ones. My friends and family all understand my current situation and they accept and support my choice. While they do not want me to leave, they also do not want me to suffer anymore.

This is not a rash decision. It has been processed for many years, in my head, in conversations with family and friends, in discussion with one of my doctors, and a few years ago in the long procedure of requesting accompanied suicide. The clinic in Switzerland requires an extensive process to ensure that the patient is chronically ill, lives with unendurable pain or suffering, and has no realistic hope of relief. They require a number of medical records as well as consultations with specialized doctors.

For me, and I believe for many other ME/CFS patients, this end is obviously not what we wanted, but it was the best solution to an extremely difficult situation and preferable to even more suffering. It was not hasty choice, but one that matured over a long period of time.

A plea to decision makers – Give ME/CFS patients a future!
As you understand, this blog post has taken me many months to put together. It is a long text to read too, I know. But I felt it was important to write it and have it published to explain why I personally had to take this step, and hopefully illuminate why so many ME/CFS patients consider or commit suicide.

And most importantly: to elucidate that this circumstance can be changed! But that will take devoted, resolute, real action from all of those responsible for the state of ME/CFS care, ME/CFS research and dissemination of information about the disease. Sadly, this responsibility has been mishandled for decades. To allow ME/CFS patients some hope on the horizon, key people in all countries must step up and act.

If you are a decision maker, here is what you urgently need to do: You need to bring funding for biomedical ME/CFS research up so it’s on par with comparable diseases (as an example, in the US that would mean $188 million per year). You need to make sure there are dedicated hospital care units for ME/CFS inpatients in every city around the world. You need to establish specialist biomedical care available to all ME/CFS patients; it should be as natural as RA patients having access to a rheumatologist or cancer patients to an oncologist. You need to give ME/CFS patients a future.

Please listen to these words of Jen Brea, which sum up the situation in the US, but are applicable to almost every country:

“The NIH says it won’t fund ME research because no one wants to study it. Yet they reject the applications of the world class scientists who are committed to advancing the field. Meanwhile, HHS has an advisory committee whose sole purpose seems to be making recommendations that are rarely adopted. There are no drugs in the pipeline at the FDA yet the FDA won’t approve the one drug, Ampligen, that can have Lazarus-like effects in some patients. Meanwhile, the CDC continues to educate doctors using information that we (patients) all know is inaccurate or incomplete.”

Like Jen Brea, I want a number of people from these agencies, and equivalent agencies in Sweden and all other countries, to stand up and take responsibility. To say: “ME! I am going to change things because that is my job.”

And lastly
Lastly, I would like to end this by linking to this public comment from a US agency meeting (CFSAC). It seems to have been taken off the HHS site, but I found it in the Google Read version of the book “Lighting Up a Hidden World: CFS and ME” by Valerie Free. It includes testimony from two very eloquent ME patients and it says it all. I thank these ME patients for expressing so well what we are experiencing.
https://books.google.se/books?id=6QMrDQAAQBAJ&pg=PA321&lpg=
PA321&dq=CFSAC+moore+billie&source=bl&ots=gIh7zwwXzE&sig=_
wbeBOe2EMhk3lxhyeUMG2EZf_4&hl=sv&sa=X&ved=0ahUKEwjlqafq
76XQAhUC_iwKHYkUCxUQ6AEIKzAC#v=onepage&q=CFSAC%20m
oore%20billie&f=false

PS.

My previous blog posts:

From International Traveler to 43 Square Meters: An ME/CFS Story From Sweden

Coping With ME/CFS Will Always Be Hard – But There are Ways of Making It A Little Easier

The Underfinanced ME/CFS Research Field Pt I: The Facts – Plus “What Can We Do?

The Underfinanced ME/CFS Research Field Pt II: Why it Takes 20 Years to Get 1 Year’s Research Done

My Swedish ME/CFS newsletters, distributed via e-mail to 2700 physicians, researchers, CMOs, politicians and medical journalists:
https://mecfsnyheter.se/

Take care of each other.

Love, Anne

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http://www.effinghamdailynews.com/news/judge-urges-action-on-percent-manmade-opioid-crisis/article_4a39f235-81fb-581a-acdc-3f26c02090f0.html

COLUMBUS, Ohio (AP) — A federal judge this week set a goal of doing something about the nation’s opioid epidemic this year, while noting the drug crisis is “100 percent man-made.”

Judge Dan Polster on Tuesday urged participants on all sides of lawsuits against drugmakers and distributors to work toward a common goal of reducing overdose deaths. He said the issue has come to courts because “other branches of government have punted” it.

The judge is overseeing more than 180 lawsuits against drug companies brought by local communities across the country, including those in California, Illinois, Kentucky, Ohio and West Virginia. Municipalities include San Joaquin County in California; Portsmouth, Ohio; and Huntington, West Virginia.

“What we’ve got to do is dramatically reduce the number of pills that are out there, and make sure that the pills that are out there are being used properly,” Polster said during a hearing in his Cleveland courtroom. “Because we all know that a whole lot of them have gone walking, with devastating results.”

The judge said he believes everyone from drugmakers to doctors to individuals bear some responsibility for the crisis and haven’t done enough to stop it.

The government tallied 63,600 overdose drug deaths in 2016, another record. Most of the deaths involved prescription opioids such as OxyContin or Vicodin or related illicit drugs such as heroin and fentanyl.

The epidemic is the most widespread and deadly drug crisis in the nation’s history, and for now shows little sign of abating. Counties in hard-hit Ohio already were recording overdose deaths last year that would put the state above its record 4,050 deaths in 2016.

Hundreds of lawsuits filed by municipal and county governments could end up as part of the consolidated federal case overseen by Polster, but others are not likely to.

Some government bodies, including Ohio and at least nine other states, are suing the industry in state courts. Additionally, most states have joined a multistate investigation of the industry that could end up sparking a settlement or yet more litigation against the industry.

Polster likened the epidemic to the 1918 flu which killed hundreds of thousands of Americans, while pointing out a key difference.

“This is 100 percent man-made,” Polster said. “I’m pretty ashamed that this has occurred while I’ve been around.”

Associated Press Writer Geoff Mulvihill in Cherry Hill, New Jersey, and AP Medical Writer Carla Johnson in Chicago contributed to this report.

As all these cities, counties, states and others are filing suits against various pharmaceutical manufacturers and pharmacy wholesalers… there are at least three different entities who has/have the information all along as to all of these opiates being sent to various pharmacies, written by doctors and/or pts that had prescriptions filled.

They would include the state board of pharmacy that manage the prescription monitoring programs where the data on every controlled substance prescription that is filled by a pharmacy is sent to…  that data would include the pt’s name, address, dob, medication strength/quantity and prescriber who wrote the prescription. All states – except Missouri – has one of these databases.

The DEA would/could have those same reports and/or reports from the wholesalers on purchases from pharmacies of controlled substances… including medication, strength/quantity.

The various PBM’s (prescription benefit managers). including those who are on Medicaid… that handle the processing/payment of some 80%-90% of all prescriptions handled by pharmacies and would have all the same data as the above two entities.

But none of these entities are being called into question for not stepping forward with the “so-called” damning information…  Anybody else wonder why ?

 

 

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Researchers have discovered that fibromyalgia may be a systemic neurologic disorder that can be diagnosed using a functional MRI-based “brain signature.”

https://www.medpagetoday.com/resource-centers/contemporary-fibromyalgia-approaches/fibromyalgia-brain-signature/884

Fibromyalgia currently lacks a clear-cut, objective method to confirm its diagnosis, complicating clinicians’ jobs and frustrating patients. However, researchers may be getting much closer to identifying neurophysiological markers that are diagnostic of fibromyalgia.

Patients with fibromyalgia experience widespread pain, altered cognition, fatigue, and sleep dysfunction. On top of these burdensome symptoms, it often takes several years, several doctors, a few misdiagnoses, and numerous tests before a diagnosis of fibromyalgia is confirmed. What’s worse, these patients might have to fight an uphill battle to convince clinicians, family, friends, and coworkers that their condition is a “real” one.

To provide an objective diagnostic marker for fibromyalgia, researchers recently used a multisensory approach to identify a brain signature that distinguishes individuals with fibromyalgia from individuals without it.

Of the 72 subjects who participated, all of whom were women, 37 had a confirmed diagnosis of fibromyalgia according to the 1990 American College of Rheumatology criteria.

The other 35 were healthy controls matched for age, education status, and handedness (all were right-handed).

Participants were exposed to visual and auditory stimulation and were asked to perform a finger opposition task.

A functional magnetic resonance imaging (fMRI) based neurologic pain signature (NPS) (previously validated to predict experimental pain and discriminate it from

In addition, researchers discriminated patients with fibromyalgia from healthy controls using activation patterns during painful pressure (FM-pain) and during nonpainful multisensory stimulation.

Patients with fibromyalgia experienced greater NPS than healthy participants when exposed to the same painful stimuli. Furthermore, when pattern response values were combined for the NPS, FM pain, and multisensory patterns using logistic regression, this combined classifier was able to discriminate patients from healthy participants with 92% sensitivity (confidence interval [CI], 84% – 98%) and 94% specificity (CI, 87% – 100%).

Tor Wager, PhD, director of the cognitive and affective neuroscience laboratory and professor in the department of psychology and neuroscience and the Institute for Cognitive Science at the University of Colorado, Boulder, and author of the study, said, “Abnormal responses to multisensory events was the strongest individual predictor of whether a person had fibromyalgia. This suggests it is a systemic, rather than pain specific, neurological disorder.”

The identification of a fibromyalgia-specific brain signature has the potential to launch the medical community far ahead of the past notion that the condition was in patients’ heads. According to Daniel G. Arkfeld, MD, associate professor of clinical medicine at the Keck School of Medicine of the University of Southern California (USC), and director of rheumatological education at the Keck Hospital of USC, “It is an old idea that fibromyalgia is a made-up disorder and doesn’t exist. Results of studies such as this, as well as others that have shown high levels of substance P [a pain-promoting or algesic neurotransmitter] in the spinal fluid of patients within fibromyalgia, show that there is a neuropathophysiologic basis for the unique syndrome of fibromyalgia.”

The use of such a brain signature has implications beyond improving fibromyalgia diagnosis. “There is a need for objective measures in fibromyalgia. This research may help point toward appropriate targets for a more directed approach in treating fibromyalgia,” said Dr. Arkfeld. Dr. Wager concurred, “We need to diagnose patients and group them based on the underlying neuropathology. Then we have a better chance of finding the best treatments based on an individual’s biology.”

In other words, the use of fMRI technology to observe brain patterns in real time when patients with fibromyalgia are experiencing pain and multisensory stimulation may allow patients to be diagnosed using objective measures, and may also lead to advances in fibromyalgia treatment due to the enhanced understanding of the disorder it affords. There may come a time in the not-so-distant future when fibromyalgia enters its own era of targeted medicine, with therapies tailored to individual disease characteristics such as those included in the brain signature.

 

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Pain Advocacy Coalition

www.painadvocacycoalition.com/

Pain  Advocacy Coalition is a loose knit collaborative group of patients who live with intractable pain. We are your co-workers, neighbors, friends, and family members. We are a collaborative group of former police officers, former nurses, researchers, technical writers, social media consultants, medical assistants and other varied professional backgrounds. We all share one common bond, we live with chronic pain daily, and many of us use opioids as a treatment modality to help us manage our pain effectively. We are not a volunteer organization. We are a tribe of individuals who are crowd-sourcing a solution to a common problem impacting our lives via collaborative tools. We are inviting the pain community to participate.

The medical administration of opioids for analgesia are utilized in tandem with other medical treatments, individualized to the patient’s needs, and are implemented only when other treatments are not successful for relieving pain. The use of prescribed opioid analgesia permits us to successfully participate in activities of daily living and to meet our obligations.

Opioids, when used as an analgesic, allow us to redeem some quality of life from intractable pain. Often, we experience only partial relief from analgesics. We are not able to participate in our lives at the same capacity as we once did prior to becoming pain patients. However, without opioid analgesics, many of us would decline further, experience decreased mobility, increased pain, decreased productivity and other negative outcomes.

The “opioid crisis” and the implementation of draconian policies by Center for Disease Control (CDC) that restrict prescribing opioids for legitimate pain patients have mobilized the pain community to coalesce and address the negative impact these policies have had on our community.

The Pain Advocacy Coalition grassroots movement is dedicated to addressing the “opioid crisis” by:

• raising public awareness about the impact of pain on patients, both acute and chronic
• bringing transparency to the negative impact the Center for Disease Control’s guidelines have had on the pain community and their healthcare providers
• challenging the status quo and empowering pain patients to utilize collaborative tools and platforms
• participating in a national conversation about our healthcare decisions that previously the pain community has largely been excluded from
• restoring the patient- physician- pharmacist relationship
• preventing detrimental special interest and government interference in the provision of medical care
• challenging stigma, discrimination, profiling, narrow narrative and marginalization that contribute to the obstacles and barriers that pain patients experience
• challenging the media to to offer the public balanced reporting about the “opioid crisis” including equal time outlining the impact to pain patients (acute/ chronic) and the medical community at large
• challenging the methods by which data is obtained, research is conducted, how research is funded and how statistics are being utilized to make individual medical decisions from a board room, a legislative office, third party administrator’s office or an oversight office

We intend to bring transparency to restrictive policies that are not thought of as patient-centric, but are more accurately described as profit driven. For a more expansive examination of this complex issue, check out the Pain Advocacy Coalition’s Platform.

For an expanded look at the issues pain patients across the country are facing check out this recent news report by I-team reporter George Knapp and his fellow reporters courtesy of LasVegasNow- KLAS-TV-8 report published on December 1, 2017.

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This bullshit with the DEA is getting totally out of hand! I had to go see my psychiatrist today and without me saying anything he brought up the fact that most of his peers are getting afraid to write for any controls and most definitely will not prescribe benzo’s anymore out of fear of the DEA coming down on them. He told me in his line of medicine benzo’s are a common medicine to use in conjunction with other medicines and he can’t believe his peers are stopping writing for them out of fear!

Jeff Walsh, DEA Asst. Special Agent, sits down with WESH 2’s Matt Grant to discuss issues patients are having getting legitimate prescriptions filled.

The above video is from Feb, 2015 and the reporter ( Matt Grant) from WESH TV in Orlando did a couple of dozen pieces on pharmacists in FL refusing to fill controlled med prescriptions.  Agent Walsh states that the DEA wants pts who have a legit medical need for being prescribed controlled substances that they should be able to get them.  Is there a DISCONNECT between those within the DEA who are in administration and those that are “out in the field” as to the real focus of the DEA ?

These physicians that has been treating pts for years or decades and all of a sudden decided that they are no longer going to prescribe control meds to their pts…

The Questions has to asked.. if a prescriber has been writing a particular medication for a pt for years/decades and now decides that the pt no longer needs that particular medication or any similar medication… Has the prescriber been guilty of malpractice and other issues for all those years the pt has been provided the medication or is the prescriber now walking down a path of malpractice by stopping prescribing the medication.

Was there NO CLINICAL PROOF for all those years the pt was taking the medication that it was really not needed ?  OR… is the prescriber now ignoring previous clinical evidence that the pt really had a valid medical necessity for the medication that they had been taking all that time and now refusing to treat the pt’s medical needs.  As we all know, chronic disease states typically don’t become “cured/improve” over time.

Those prescribers who are only reducing/eliminating controlled meds on pts that are/have been dealing with multiple disease issues … could be painting themselves into a corner for pt discrimination under the Americans with Disability Act, Civil Rights Act, pt abuse, medical battery for starters.  They are going to have trouble defending themselves in our court system with prefacing every statement with “in my professional opinion” to justify what they had done – or not done – for/to the pt.

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Theft at the Rx counter ?

After I made the above post, it got me to thinking just how many ways that  if a Rx dept staff was determined to divert medication from the Rx dept, just how it could be done while keeping the chances of getting caught to a minimum.

Anyone can go to just about any state’s Board of Pharmacy’s meeting minutes posted on the web and see where a Pharmacist or technician is before the board for diversion of controlled meds.

Clearly the Rx depts across this country are not completely full of a bunch of “saints”

I have had pts tell me about pharmacists doing everything from doing a partial fill .. claiming that is all they have on hand… to confiscating the pt’s prescription and claiming that they are destroying it and “tear it up” in front of the pt.

If a Pharmacist tells the pt that “half” of the amount the prescription is written for is all that is in stock and it is a “take it or leave it” situation. No pharmacy is going to have on hand 100% of the time the medication and quantity for every prescription that is presented.

Does it seem strange that the pharmacy only has “EXACTLY HALF” of what the Rx is written for ?  Some states may mandate it, but it is only the best thing for a pharmacist to do is to notify the prescriber that the entire quantity was not provided to the pt. So that when the pt shows up in a couple of week requesting another prescription, they are not viewed as a “drug seeker”.

After the pt pays for their “half” the Rx dept staff goes back and reverses the claim in the pharmacy computer and fill it for the original quantity and put the remaining “half” in their pocket to use/abuse or sell for “extra pocket money”.

The same thing could happen with the Pharmacist “tearing up the prescription” when it fact he/she is just tearing up something that looks like the pt’s prescription.

How can the pt protect themselves ?  If you don’t get a explanation from your insurance company about prescriptions that they have paid for on behalf of the pt.  wait for maybe a week after the day you were in the pharmacy and look at on line or call the insurance company when is the last time that they paid for the particular medication and the quantity the claim was submitted for… if a claim was submitted for a less quantity…then reversed and resubmitted for a larger quantity… or they paid for the med/quantity/date for the prescription that was supposedly “destroyed” by the pharmacist.

The pt should also ask their prescriber to run a report from the state’s prescription monitoring program and show what med/quantity/date was reported to that database. The should also verify with the prescriber that they were notified that the pharmacy only furnished a partial quantity for the particular prescription.

If the pt doesn’t follow thru on these issues… they could be end up being viewed as a “drug seeker” … wanting early refills, taking more than prescribed and other issues that could get the pt summarily discharged from the practice for things they did not do, nor had any knowledge of what had been done in their name.

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https://theintercept.com/2018/01/09/dark-side-fbi-dea-illegal-searches-secret-evidence/

Federal agents at the U.S. Drug Enforcement Administration speak in veiled terms about the secret DEA unit that shares intelligence from the National Security Agency and other organizations with law enforcement for use in criminal investigations. They call it the “Dark Side.”

The Special Operations Division receives raw intelligence from the NSA’s surveillance programs, including from the mass surveillance programs revealed in documents provided by whistleblower Edward Snowden. DEA agents in this unit then analyze the surveillance data and disseminate leads to federal and local police nationwide. But the information comes with a catch. Law enforcement can’t use it to secure search warrants or in any way reveal the intelligence community as the source of their leads. Instead, they must find another way to justify their searches and broader investigations.

An egregious example of this law enforcement tactic occurred in 2004 when, through intercepted phone calls and their own subsequent surveillance, the DEA discovered that Ascension Alverez-Tejeda was transporting drugs from Los Angeles to Washington state in his car. To search the vehicle without revealing the phone calls as their original source, DEA agents set up an elaborate ruse.

Alverez-Tejeda and his girlfriend were stopped at a traffic light. As the light turned green, the car in front of them started to move and then stopped quickly. Alverez-Tejeda braked in time, but a truck rear-ended him. As Alverez-Tejeda inspected the damage, police arrived and arrested the truck driver for drunken driving. Officers instructed Alverez-Tejeda and his girlfriend to drive their car to a parking lot, leave the keys in the car, and sit in the police cruiser for processing. Just then, a car thief jumped into Alverez-Tejeda’s car and drove off. Police recovered the car, obtained a search warrant, and found cocaine and methamphetamine.

Other than Alverez-Tejeda and his girlfriend, every person involved in this piece of theater was a DEA agent or local police officer: the person driving the car in front of Alverez-Tejeda’s, the “drunk” truck driver, even the supposed car thief. While a federal judge ruled that the DEA hoax violated Fourth Amendment protections against unreasonable search and seizure, an appeals court overturned the ruling and described this abuse of Alverez-Tejeda’s constitutional rights as “relatively mild.”

The convoluted and secretive process of building a case to obscure the use of underlying intelligence, known as “parallel construction,” is meant to protect the intelligence community’s sources and methods, according to internal DEA documents. It also often deprives the accused of a fair shot at defending themselves in court because some of the evidence against them is not made public.

“The federal government is deliberately concealing methods used by intelligence or law enforcement agencies to identify or investigate suspects — including methods that may be illegal.”

The DEA’s Special Operations Division is one of several tools the government uses to hide the origins of criminal investigations nationwide, in potential violation of constitutional protections. In a report released today, “Dark Side: Secret Origins of Evidence in U.S. Criminal Cases,” Human Rights Watch documents the use of parallel construction by federal and local police agencies, finding the practice is used in the United States “frequently and possibly even daily.”

“A growing body of evidence suggests that the federal government is deliberately concealing methods used by intelligence or law enforcement agencies to identify or investigate suspects — including methods that may be illegal,” the report states. “It does so by creating a different story about how agents discovered the information, and as a result, people may be imprisoned without ever knowing enough to challenge the potentially rights-violating origins of the cases against them.”

Among Human Rights Watch’s findings:

• Traffic stops and vehicle searches are commonly used as the pretext for investigations in order to protect the true source.
• Government agents use parallel construction to conceal both high-tech methods, such as the NSA’s surveillance programs, as well as crude ones, such as illegal searches of vehicles and bags.
• Prosecutors assist law enforcement agents in concealing the origin of investigations by telling judges and defense lawyers that they are not required to find out if certain agencies, including the NSA, were involved in the case.

As Human Rights Watch has documented, parallel construction, and the internal government debate about its efficacy and legality, extend back at least to the mid-1970s. A panel of intelligence officials in 1976 lamented that if prosecutors disclosed the use of intelligence information to defendants and judges, secret surveillance “methods could be publicly revealed.” A 1983 CIA document suggested that drug agencies use intelligence information to power their investigations but that they protect that information by building “a firebreak in the evidentiary [trail] leading to sources and methods.”

Indeed, the pioneers of parallel construction appear to be drug agents. Not all federal law enforcement agencies were on board at first. The FBI was skeptical that the methods the DEA used were legal, Michael Horn, the first special agent-in-charge of the DEA’s Special Operations Division, said during a 2015 DEA panel. “When [the FBI] started seeing some success, they … kind of changed their mind,” Horn said.

In a sophisticated form, parallel construction may involve the use of information from the NSA’s mass surveillance programs that is then re-obtained through the less controversial powers granted by the 1976 Foreign Intelligence Surveillance Act. When prosecutors present the information in court, they source it to traditional FISA, rather than the more controversial mass surveillance program. The Intercept reported in November 2017 that this occurred in the case of Fazliddin Kurbanov, who was convicted in Idaho on terrorism-related charges. Although classified NSA documents revealed that Kurbanov’s communications had been intercepted through PRISM, a warrantless mass surveillance program, the Justice Department claimed in court that he had only been subjected to warrant-based surveillance under traditional FISA powers.

“Defendants have no way of knowing their rights have been violated.”

In its cruder and likely more common form, parallel construction may involve information from mass surveillance, a highly sensitive informant, or an illegal search that is then disguised. In a case Human Rights Watch discovered, security video at a New Mexico bus station showed a DEA agent illegally searching luggage left on a Greyhound bus during a layover. When passengers returned, the DEA agent asked for consent to search a passenger’s bag, already knowing that it contained methamphetamine.

“Under human rights law, everybody has the right to a fair trial,” said Human Right Watch investigator Sarah St. Vincent. “And that means what it says, so when you have the government deliberately concealing investigative actions that may have been illegal, defendants have no way of knowing their rights have been violated.”

Even DEA employees seem to know something untoward is afoot in the Special Operations Division, the unit that passes intelligence to law enforcement. As Arthur Rizer, a former federal prosecutor who worked in the unit, told St. Vincent: “When we all left, we got little keychains of Darth Vader.”

Correction: Jan. 9, 2018
An earlier version of this story mistakenly attributed a quote from DEA official to an interview with Human Rights Watch. The quote, which appeared in an HRW report, was from a 2015 DEA panel.

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Walgreens did the same to me even worse they made me give back my Xanax in order to fill my Norco prescription. This was about a year ago. I’m 70 years old I just had serious shoulder and arm surgery it was the same day I came out of the hospital they would not fill my prescription unless I was present with my ID I went through the drive-thru my friend drove me I was in a great deal of pain you could see it on my face and that pharmacist was a dog to me I willingly gave them my Xanax which was I feel full prescription just to get my pain pills because that’s how much pain I was in. Thank God I found a pharmacist that delivers to me and doesn’t give me any trouble I don’t know what this world is coming too

The above was posted – as a comment – on my blog yesterday. Unless they have changed some major rule/law that I am not aware of… IT IS ILLEGAL for any healthcare professional to take/accept – be in the possession of –  controlled medication from a pt… even it is for the intent of them being destroyed.

Many pharmacies have installed “drop boxes” for pts to use to send their unused/unwanted meds out for destruction.

This issue being a year ago and this pt posted this statement anonymously leaving neither a email nor a name.. it  would be sort of hard for the board of pharmacy to follow up on.  Because my blog is ran under WORDPRESS… this pt’s post has the IP address displayed with the comment to the administrator of the blog … so I know which state she was in at the time of making the comment.

Pharmacists and Rx dept staff are not immune to having substance abuse problems. I had my own independent pharmacy for 20 yrs and we discovered one employee Pharmacists that was “shooting up” on the job and another had a spouse that had a substance abuse problem. I am aware of a local pharmacist that didn’t have a substance abuse problem but was caught stealing/selling Norco’s because she like to patronize a nearby CASINO.

The DEA has apparently came this medical determination that the two medications (opiate & benzo) has no valid medical use and no pt should be prescribed these two medications together.  Of course, it would appear, to me, that the DEA has come to this conclusion because those people who like to abuse certain substances will take both a opiate and a benzo together and in very high doses … TO GET HIGH…

This, of course, has no relationship with the appropriate prescribing and dosing of these two meds to pts who have a valid medical necessity for them and who take them as prescribed.

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