Archive for the ‘Activism’ Category

Bug That Hijacked My Mind (Part 1)

This article, copied in full from the Huffington Post, is an example of how MSIDS (multi systemic infectious disease syndrome, or Lyme with friends) can cause horrific psychiatric manifestations.  If you are experiencing these symptoms, print out and take the ILADS brochure to your doctor.  The link is found about half way through the article.  Also, please note that treatment ameliorated his anxiety.

http://www.huffingtonpost.com/david-michael-conner/the-insanity-of-lyme-disease_b_8696794.html  by David Michael Conner

I sat in my Honda Civic watching people arrive one by one at Lynnet’s house, feeling like a stalker. So many other people were showing up, but so far not a single person I knew. You’re 27, I told myself. This is no big deal. And then I braced the bottle of wine I had bought for the party as I shifted the car into drive and pulled away from the curb. Somehow a panicked sparrow had taken up the space in my chest where my heart should be, beating its wings madly against the breastbone, and my whole body was burning and stinging. I thought I was going to pass out.

My first panic attack hit hard during graduate school. Although I had never been a socialite and never enjoyed forcing small talk with stranger, I had never before been afraid of people. I never had a disorder that scared me away from others and which limited my capabilities. I only recognized what I was feeling because I had for years read information from the National Institute of Mental Health (NIMH) and National Alliance on Mental Illness (NAMI) as part of my job. Huh, I thought. I have social anxiety. Who knew?

I had flourished as an undergraduate, but the undergrad lifestyle didn’t require schmoozing at professors’ homes with respected and award-winning authors, agents, et al. I wasn’t cut out for it. I made it through, but certainly not on the strength of my ability to wine-and-hors-d’oeuvre Very Important People.

I accepted the limitations this placed on my life as panic attacks became more frequent in social situations, even as they encroached on my professional life, which involved a lot of receptions, group dinners and related functions. But by my early 30s, anxiety events were getting out of hand: as a personal challenge, I went to a networking function co-hosted by CNN and the National Lesbian and Gay Journalists Association, and after only mustering the will to speak to one person (who turned out to be the event caterer), I felt suddenly as if I had been placed under a broiler, burning hot, disoriented, faint. I ran, literally, outside and walked home with tears flowing uncontrollably down my face from the pressures of inexplicable panic and a general feeling of failure.

Within months, I began to experience recurring visions of my body toppling over the edge of my 10-story apartment building. Over and over, like a film reel on a loop. I had never had any sort of mental vision before. This was totally new and disturbing, like a nightmare intruding on waking life. Eventually, I was so afraid of people that I ran out of food because I couldn’t handle grocery shopping, and I began to order Peapod delivery service. I had developed an intimate relationship with depression since my adolescence, but this was something else entirely — something far more active, aggressive and almost demonic feeling. At 32, I found a psychiatrist to cope with these increasingly disturbing and totally new problems, which coincided with an array of physical health problems that doctors at the time thought might be caused by multiple sclerosis.

My psychiatrist immediately loaded me up with Zoloft, Wellbutrin, Clonopin and a low dose of Seroquel — typically prescribed for bipolar disorder and schizophrenia, but sometimes prescribed “off label” in very low doses for use as a sleep aid and to treat obsessive-compulsive disorder. She said the visions and paranoia were a kind of psychosis that could fall into OCD or other severe anxiety categories, or perhaps could be a manifestation of bipolar mania. Although I had read a great deal about mental illness as a primary part of my job, and interacted with mental health advocates and researchers, I wasn’t immune to the stigma; I didn’t want to be prescribed an “atypical antipsychotic.” Yet I was desperate enough to reluctantly agree to take it. This was a life-or-death situation, as the constant playback of seeing myself fall from great heights was disturbing from the beginning, but was now beginning to feel like an inevitable prediction of what was to come.

Years into treatment, the scary visions had ceased but the high anxiety still rode alongside me, if not usually in the driver’s seat.

I was diagnosed with Lyme disease last February, at age 36. Several months into antibiotic treatment, the constant feeling of agitated panic I had come to accept as a part of my intrinsic personality had diminished so much that I had no feeling of dread whatsoever about an upcoming three-day meeting that involved networking with 30 people, some total strangers. This unusual lack of panic was almost as jarring as the first panic attack I experienced; it was that novel.

If I, or if any one of the dozen-plus doctors I’ve seen over the past five years, had seen this brochure from the International Lyme and Associated Disorders Society (ILADS), http://www.ilads.org/lyme/lyme-brochure-psych-2014.pdf life could have been so much easier so many years ago. It is written for mental health practitioners, but the brochure details emotional and psychiatric — as well as, crucially, cognitive — symptoms of Lyme, as well as non-psychiatric symptoms that in combination can lead to a differential clinical diagnosis of Lyme. And such a diagnosis and resulting treatment for Lyme disease can be just as important to improving neuro-psychiatric symptoms of Lyme as can cognitive-behavioral therapy and psych medications.

In the next post, I’ll discuss the case of my clinical doppelganger — the subject of a recent medical case study whose age and psychiatric and physical symptoms almost exactly mirror mine, but whose outcome has not fared as well as mine. I’ll also talk about how a little awareness can prevent these journeys into madness, which unfortunately are common symptoms of Lyme disease, and whose symptoms are treated with a Band-Aid approach using antidepressants, antianxiolytic, and antipsychotic prescription medications instead of treating the infectious disease at the root.

___________________

If you — or someone you know — need help, please call 1-800-273-8255 for the National Suicide Prevention Lifeline. If you are outside of the U.S., please visit the International Association for Suicide Prevention for a database of international resources.

For more information on psychiatric issues with MSIDS:

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

http://up.anv.bz/latest/anvload.html?key=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“>http://up.anv.bz/latest/anvload.html?key=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  (Amy Hilfiger on Fox5News)

https://madisonarealymesupportgroup.com/2015/12/06/tips-for-newbies/

 

Help Lyme Research Agenda

https://www.lymedisease.org/lymepolicywonk-help-shape-top-10-survey/  by Lorraine Johnson, JD, MBA, and Chief Executive Officer of LymeDisease.org.

Help Shape Top 10 Priorities for Lyme Research Agenda by Taking Our Survey  

(Click on link above to take survey)

Today, LymeDisease.org launches a survey of 25 research questions for the community to vote on and prioritize. The answers will be used to develop a research agenda for the Lyme community which will be publicized and used as a tool to give patients a voice in the funding of research. The ultimate goal is to ensure that research that matters to patients is funded.

It’s a fact of life that scientists often pursue research questions for their own reasons. Sometimes it’s a pet theory. Other times it may be aligned with a commercial prospect or research that may further their career. Unfortunately, those reasons don’t necessarily line up with the priorities of the people who have the most at stake in the outcome of that research—critically ill patients who are waiting for a cure.

A recent British Medical Journal article by Sally Crowe who works with the James Lind Alliance in the UK explains why patient-driven research agendas should be the foundation of funding grants:

“The …objective of . . . health research is to improve the health outcomes of patients. Our findings show a critical gap between current research and what patients considered to be high priority, and may reflect the lack of patient engagement in research priority setting.”

Our survey is the next step in a process launched in November 2015 at the American Association for the Advancement of Science (AAAS) in Washington D.C. Fifty Lyme disease experts participated in the conference—including 23 patients, 17 researchers, and 10 clinicians. Kristen Honey at the White House orchestrated the convening. LymeDisease.org was given the lead in developing the research question prioritization process and three of its board members spoke at the conference. I was fortunate to participate on a big data panel, with Dr. John Aucott, and D.J. Patel, White House Chief Data Scientist, and announce the launch of our big data project, MyLymeData.

Many physicians from the International Lyme and Associated Diseases Society, including Drs. Ken Liegner, Sam Shor, Chris Green, and Betty Maloney attended. Participating researchers included Drs. John Aucott, Ying Zhang, Nevena Zubcevik, and Cheryl Koopman, Patient community leaders included Phyllis Mervine, Jill Auerbach, Pat Smith, and others.

A series of short presentations sparked debate and dialogue among those attending and ultimately resulted in a preliminary list of research priorities. The decision could have ended there, in the hands of 50 people. However, the goal was to submit the research agenda to the community at large to ensure broad, inclusive participation from the community for those who did not attend the conference.

After last year’s kick-off conference, over 1,000 MyLymeData participants ranked the importance of the preliminary questions and suggested new questions to include on the list. We are now asking for your help in the final step of prioritizing the questions.

This will help us understand which questions are most important to patients, carers, families, researchers, and healthcare professionals for future research.

Please take part if you or a loved one has Lyme disease, or if you are a clinician working with Lyme patients, or a scientist conducting Lyme disease research. Organizations representing the interests of people with Lyme disease may also participate.

Our process is loosely based on that of the James Lind Alliance, which brings clinicians and patients in the UK together to establish research priorities. The James Lind Alliance process typically involves a number of in-person meetings and takes two or more years. We are using technology to amplify the patient’s voice and increase the reach of the survey to include patients who were not involved in the initial meeting.

If you want further inspiration on what’s important for research, we recommend that you take a look at a guest blog by Lyme patient Sherrill Franklin giving her views.

The survey takes roughly 5-10 minutes to complete. Please take the survey so your voice can be counted!

Crowe S, Giles C. Making patient-relevant clinical research a reality. BMJ. 2016;355.

The LYME POLICY WONK blog is written by Lorraine Johnson.  You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.

 

CDC’s Frieden to Resign

In response to the news that Dr. Thomas Frieden will resign as head of the CDC, Carl Tuttle, long time advocate for Lyme patients offers a letter.  The take home: Don’t let the door hit you on the way out.

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/18972572?tk=O3SM6UTtqUevRVgDtja5nLTMysFCAmjjyHN_hPvpSGY&utm_source=petition_update&utm_medium=email

PETITION UPDATE

Zero accountability at the Centers for Disease Control

Carl Tuttle
Hudson, NH
JAN 6, 2017

Frieden to Resign as CDC Director
December 31, 2016 By Pat Anson, Editor
https://www.painnewsnetwork.org/stories/2016/12/31/frieden-to-resign-as-cdc-director

“Dr. Thomas Frieden, who has headed the Centers for Disease Control and Prevention for nearly eight years and played a pivotal role in the agency’s opioid prescribing guidelines, plans to submit his resignation on January 20, the day of President-elect Donald Trump’s inauguration.”

Jan 5, 2017

Centers for Disease Control
1600 Clifton Road
Atlanta, GA 30329-4027
Attn: Dr. Tom Frieden, Director

Dr. Frieden,

In addition to the blatantly obvious mishandling of the Lyme disease epidemic here in the United States, here is a review the CDC’s track record while you were the Director:

1. RFK Jr.: CDC Vaccine Program a ‘Cesspool of Corruption’
http://www.newsmax.com/Newsfront/RFK-Jr-vaccine-CDC-cesspool/2015/06/01/id/648103/?ref=fb#ixzz43eE2NMxq

2. A recent CDC whistleblower announced the suppression of information linking the MMR vaccine to autism.
http://www.morganverkamp.com/august-27-2014-press-release-statement-of-william-w-thompson-ph-d-regarding-the-2004-article-examining-the-possibility-of-a-relationship-between-mmr-vaccine-and-autism/

3. CDC misled District residents about lead levels in water, House probe finds
http://www.washingtonpost.com/wp-dyn/content/article/2010/05/19/AR2010051902599.html

4. U.S. Congressman Compares Corruption in CDC’s Vaccine Safety Studies to SEC’s Handling of Bernie Madoff Scandal
http://www.prnewswire.com/news-releases/us-congressman-compares-corruption-in-cdcs-vaccine-safety-studies-to-secs-handling-of-bernie-madoff-scandal-255471691.html

5. Questions CDC suppression of data regarding links between housing trailers provided to Katrina victims and cancer.
http://truth-out.org/archive/component/k2/item/76273:cdc-under-investigation-over-katrina-cancer-risk

6. Congressional inquiry regarding the CDC’s refusal to release study results regarding hazardous waste sites in the Great Lakes region and associated health problems.
http://www.care2.com/news/member/597720583/658207

7. CDC exposed as private corporation colluding with Big Pharma
https://www.intellihub.com/cdc-exposed-as-private-corporation/

8. CDC labs repeatedly faced secret sanctions for mishandling bioterror germs
http://www.usatoday.com/story/news/2016/05/10/cdc-lab-secret-sanctions/84163590/
Alison Young, USA TODAY 8:24 p.m. EDT May 10, 2016

9. The CDC SPIDER bites! CDC Whistleblowers Team Up and Demand “House Cleaning” and Lend Credence to Increasingly Critical Views of Authority Structures
http://globalfreedommovement.org/the-biggest-medical-whistleblower-event-in-history-just-happened/ October 23, 2016 by Global Freedom Movement

“We are a group of scientists at CDC that are very concerned about the current state of ethics at our agency. It appears that our mission is being influenced and shaped by outside parties and rogue interest.”

10. Master Manipulator: The Explosive True Story of Fraud, Embezzlement, and Government Betrayal at the CDC by Dr. Mercola December 04, 2016
http://articles.mercola.com/sites/articles/archive/2016/12/04/cdc-fraud-misinformation-manipulation.aspx?utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20161204Z1&et_cid=DM127588&et_rid=1782518608

Statistics don’t lie, but statisticians certainly can. “Master Manipulator: The Explosive True Story of Fraud, Embezzlement, and Government Betrayal at the CDC,” investigative journalist James Grundvig exposes what really goes on at the U.S. Centers for Disease Control and Prevention (CDC).
___________________

Please be sure to add these ten articles to your curriculum vitae to insure that you are never again involved in public health.

Carl Tuttle
Hudson, NH

Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker and Lorraine Johnson
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3879353/

For more damning information on the CDC:

https://madisonarealymesupportgroup.com/2016/06/20/cdc-widespread-abuse-of-knowledge/

https://madisonarealymesupportgroup.com/2016/07/12/cdc-exec-resigns-caught-colluding/

https://madisonarealymesupportgroup.com/2016/07/11/dr-phillips-completely-trounces-cdc/

https://madisonarealymesupportgroup.com/2016/11/29/spider-attacks-cdc/

https://madisonarealymesupportgroup.com/2016/09/04/cdc-report-on-zika/

 

 

Fake Science

https://jameslyonsweiler.com/2016/12/30/fake-science-when-is-medical-science-not-science/  December 30, 2016  James Lyons Weiler

We’ve all heard about “Fake News,” but Weiler makes a compelling case for Fake Science happening all around us.  Please read the article in full at the link above, but below is an abbreviated summary:

Bias #1. Piracy: Regulatory Capture of Agencies (Corporations send people to get positions within agencies – when issues concern the corporation, they conduct research in-house where they can control things)

Bias #2. The Block: Non-Objective Peer Review (Grant Application Stage) Weiler witnessed 1st hand a NIH reviewer accuse, without evidence, a competitor of making up data in their grant proposal. They can toss grant applications quite easily with no hard reasons or proof.

Bias #3. The Check: Non-Objective Peer Review (Submitted Manuscript Stage) Journals can be wholly owned by corporations.

Bias #4. Mob Censorship/Study Assassination: Retraction of Published Studies Unfavorable to Corporate Agenda

Bias #5. Flawed Meta-analyses, Inflated Presumption of Statistical Power
“Once the scientific literature has been sanitized of any studies that could show harm for a corporation’s product, someone is funded (usually by the corporation with financial interest) to conduct a special type of study called a meta-analysis. In a meta-analysis, a supposedly unbiased sample of available studies are pulled together, and their statistical analyses and results condensed into one, large conclusion.”

Bias #6. Flawed Medical Education and Kick-Backs….“medical professionals learn that even though it is illegal for individual medical doctors to receive kickbacks to incentivize specific medical options, their practices can be given significant kick-backs (monetary incentives) or selecting the medical options being promoted by very wealthy corporations…. I point out in “Cures vs. Profits”, that the profit motive thereby has a dramatically homogenizing effect on medicine….This homogenization effect restricts the freedom of choice to the health care consumer, whose options are pre-selected by what the law has referred to as ‘learned intermediaries’ led by industry cheerleaders called ‘Key Opinion Leaders’ who spin the positive and further minimize the negative consequences of a drug or medical procedure they are peddling. [See See Carl Elliott’s “The Secret Lives of Big Pharma’s ‘Thought Leaders”, Chronicle of Higher Education, 2010].”

Bias #7. Failure of Duty to Warn, Neglect of Rights to Informed Consent: Weiler claims pediatric patients get 7 minutes with a doctor, and the doctor gets $400 for every fully vaccinated child. “In 2016, the AAP encouraged its members to refuse medical care to children whose parents ask too many questions – the threat of which by any definition is ‘coercion’.”

****”Which explains why the 21st Century Cures Act has made is possible for those conducting medical experiments to enroll any American citizen in a clinical trial – without their consent – as long as those conducting the trial can convince their IRB the risk is minimal. According to the interpretive summary, ‘(Sec. 2263) Clinical testing of medical devices or drugs no longer requires the informed consent of the subjects if the testing poses no more than minimal risk and includes safeguards.’”

Bias #8. News Media Blackout: Blackout on Ebola when White House asked the AP to stop reporting on it. It took De Niro’s pulling “VAXXED” from a film festival for the media to report on vaccines even though it was produced by a reputable producer, had two celebrity doctors who did a 180 on their stance on vaccines as well as a vaccine whistleblower who showed the CDC “sanitized” results. Weiler also shows how Andrew Wakefield’s study was retracted after a reporter, not a scientist, alleged impropriety in the study design approval. The CDC whistleblower states this is what the CDC does all the time.

Bias #9. Government Agency Censorship of Informed American Citizens: Weiler and a colleague prepared a joint comment and rebuttal fighting a “weakening for the MMR and MMR-V information sheets.” It finally appeared but altered with key sections redacted.

In summary: Fake Science abounds all around us, and no one understands this better than a Lyme/MSIDS patient.  

Welcome to our world.

Prelim MyLymeData Results

https://www.lymedisease.org/lymepolicywonk-mylymedata-findings-scientific-conferences/

MyLymeData, launched last November, surveyed over 4,000 patients and has presented preliminary results:

**23% more patients who were diagnosed early reported being well compared to those diagnosed late.

**Of those diagnosed early, 68% remained ill.

**For those diagnosed late, 91% reported still being ill.

**57% reported that diagnostic delays were associated with false negative test results.

**13% with positive test results were dismissed by their clinicians as “false positives”.

MyLymeData is among the top 10% of patient registries in the nation.

The newest phase of MyLymeData is open to both current and new enrollees who may register at LymeDisease.org. Patients currently participating in MyLymeData simply login to their accounts to complete the new survey sections.

Please take part in this important research.  Current NIH studies have utilized only 40-130 patients, making MyLymeData very unique.