Archive for the ‘Activism’ Category

Why We Care So Strongly About A Potential Lyme Vaccine

https://www.lymedisease.org/touchedbylyme-why-we-care-lyme-vaccine/

TOUCHED BY LYME: Why we care so strongly about a potential vaccine

by Dorothy Kupcha Leland

I was recently contacted by a reporter for a national news organization. She was blunt: why is your organization so opposed to a vaccine for Lyme disease?

Note, she didn’t say “what is your organization’s opinion about it?” or “are you opposed to it?” She re-stated several versions of this basic question: “why would an organization that is supposed to help Lyme patients be opposed to a vaccine that would protect people from Lyme disease?”

Sigh.

On the fast track

This comes as the French company Valneva SE is preparing for Phase 2 trials of its proposed Lyme vaccine, VLA-15. It has received fast-track designation from the FDA, which is a way of expediting the development of new drugs that are deemed to be especially needed.

It also comes on the heels of plenty of news coverage framing any discussion of a Lyme vaccine like this: A Lyme vaccine—any Lyme vaccine—is automatically a good thing. Anybody who raises any questions about it is a wicked “anti-vaxxer.” After all, look what those terrible people did to LYMErix.”

So, let me clarify a few points for the record.

LymeDisease.org is not “anti-vaccine.” Rather, we think important questions should be answered about the last Lyme vaccine before a new one is approved.

Safety first

Plain and simple, we care about safety. The last vaccine, LYMErix, was introduced in 1998 and withdrawn from the market in 2002, after a number of serious problems cropped up.

Among them:

  • Over 1000 adverse events related to LYMErix were reported to the FDA, including death, strokes, musculoskeletal effects and neurologic effects.
  • Over 400 people who felt they had been injured by the vaccine were preparing a class-action lawsuit against the manufacturer
  • The last vaccine was not very effective. It required three doses given over the span of a year, to achieve less than 80% effectiveness.
  • Furthermore, it was unclear whether booster shots would be required.
Osp A

According to Valneva, VLA15 targets outer surface protein A (Osp A) of Borrelia, and

“the anticipated safety profile is expected to be similar to other vaccines using the same technology.”

Guess what? LYMErix was also based on Osp A. And its safety issues have never been appropriately addressed.

Here’s our bottom line: we want these concerns investigated and resolved before any new Lyme vaccine comes on the market.

Co-infections

There’s another matter as well. It’s becoming ever clearer that tick-borne diseases include many strains of Borrelia (not just Borrelia burgdorferi—what might be considered “classic” Lyme) along with other pathogens such as Babesia, Anaplasma/Ehrlichia, and Powassan virus.

An Osp A vaccine won’t do diddly-squat for co-infections.

Thus, we’re also concerned that a vaccine that only targets classic Lyme will give a false sense of security to those who receive it.

The market for a Lyme vaccine is projected to be between $800 million to $900 million a year.

I would think a company that stands to make that kind of money would cross their t’s and dot their i’s, in preparing the way for their product.

Yet, the manufacturers have not been forthright about safety issues with the previous vaccine. Nor have they reached out to the Lyme community in connection with this new one.

Here’s a thought: Valneva, why don’t you change your approach, starting right now? Answer our questions. See if you can allay our fears. It’s the right thing to do.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .

________________

**Comment**

Unfortunately, this infantile attack ploy against anyone who raises ANY questions about ANY vaccine is occurring as I write this sentence.  It blows my mind how any professional gets away with name calling and bullying:

https://madisonarealymesupportgroup.com/2018/03/13/baylor-doc-bullies-parents-of-injured-children/

After all, much vaccine fraud has been uncovered recently:

https://madisonarealymesupportgroup.com/2018/07/20/hhs-vaccine-fraud-proven/

https://madisonarealymesupportgroup.com/2017/10/15/vaccines-and-retroviruses-a-whistleblower-reveals-what-the-government-is-hiding/

https://madisonarealymesupportgroup.com/2018/07/10/pediatricians-state-new-who-aefi-guidelines-put-childrens-lives-at-risk-200-evidence-based-reasons-not-to-vaccinate/

https://madisonarealymesupportgroup.com/2018/06/21/u-s-government-continues-to-pay-millions-in-vaccine-injuries-death-settlements/

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

More on the Lyme vaccine:  https://madisonarealymesupportgroup.com/2018/07/01/lyme-vaccine-fail-safety-ignored/

https://madisonarealymesupportgroup.com/2018/06/07/the-lyme-vaccine-russian-roulette/

https://madisonarealymesupportgroup.com/2018/01/28/the-secret-x-files-the-untold-history-of-the-lymerix-vaccine/

https://madisonarealymesupportgroup.com/2017/09/07/20268/

https://madisonarealymesupportgroup.com/2017/07/01/pbs-lyme-vaccine/

Lyme Costs May Exceed $75 Billion Per Year

https://www.lymedisease.org/lymepolicywonk-costs-75billion/

LYMEPOLICYWONK: Lyme disease costs may exceed $75 billion per year

By Lorraine Johnson

I recently submitted a projected cost of illness analysis for Lyme disease to the federal Tick-Borne Diseases Working Group. My full comments are here:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2018-07-24/written-public-comment/index.html

The conclusion is that the number of people with chronic Lyme disease likely ranges between 1 and 3 million and the annual cost—for chronic Lyme disease alone—may top $75 billion a year.

The cost is based on a study by Dr. Xinzhi Zhang, an epidemiologist who works for the Centers for Diseases Control. (Not to be confused with Dr. Ying Zhang at Johns Hopkins.)[1]

The number of people estimated to have chronic Lyme disease is based on studies of treatment failure rates for both early and late Lyme disease. Treatment failure rates range from 35% to 50%.[2-6]

Studies that show lower treatment failure rates are based on ideal diagnosis with prompt antibiotic treatment of 20 days or more, and they gauge treatment success by “objective” criteria—like resolution of a rash caused by Lyme disease.

In contrast, patients measure treatment success by whether they are restored to health—and that is the measure that we used.

Let me first give you the big picture, then I’ll drill down into the details.

chart-1-1

The annual cost of a disease depends on how many people have it and how much it costs to treat it per year. Sounds easy enough, but there are no official counts on the number of people with late/chronic Lyme disease.

The number of people with late or chronic Lyme disease depends on how many people contract Lyme disease annually and how many of those get well or die. The CDC estimates that 300,000 cases of Lyme disease occur each year and we will work with that.[7]

(Bear in mind, though, that a recent Wall Street Journal article suggests that these numbers undercount cases in “low-incidence” states by as much as 50 times. [8])

If 300,000 people contract Lyme disease each year, how many remain ill and for how long? That depends in part on whether they are diagnosed and treated early or late.

A study by Hirsch out of Johns Hopkins suggests that as many at 40% of Lyme patients are not diagnosed early. An earlier study by Aucott found that even with early diagnosis and treatment, roughly 35% developed new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties at six months after treatment.[6]

Of course, treatment failure rates are higher for those diagnosed late and for those with the persistent form of the disease. Treatment failure estimates in those with late/chronic Lyme disease range from 34-53% using broad demographic data with follow-up periods extending out to 4.5 years.[2, 3, 5, 9]

These estimates of treatment failure rates associated with early and late Lyme disease suggest that the prevalence range of persistent or chronic Lyme disease is between 35-50% of those who contract Lyme disease.

Once a patient has chronic Lyme disease, the question becomes “how long does it last?” The majority of patients in our published survey of over 3,000 reported that they had been ill for 10 or more years.[10] We did not ask how much longer than 10 years and so many may have been sick 15, 20 years, or more. Some might remain ill for the rest of their lives.

The last piece of information you need to determine the annual cost of chronic Lyme disease is a good estimate of the cost of the illness. For this, we turned to the CDC and an analysis conducted by Dr. Xinzhi Zhang.

His CDC study in 2002 estimated the total cost of Lyme disease at $203 million, based on the estimate of Lyme cases at that time–approximately 24,000 surveillance cases a year.

However, in 2013, the CDC dramatically increased the number of cases of estimated Lyme disease cases per year to over 300,000. That drove the annual cost of Lyme disease to exceed $3.1 billion. (See: Annual Lyme costs now top $3.1 billion–It’s time to wake up!)  https://www.lymedisease.org/lymepolicywonk-annual-lyme-costs-now-top-3-1-billion-its-time-to-wake-up-2/  The increased cost reflected the CDC’s revision of case numbers from 30,000 to 300,000 and adjustments for inflation.

As it should, the CDC study estimate reflects the full societal cost of Lyme disease. This includes direct medical costs, indirect medical costs (additional medication costs), non-medical costs (e.g. travel), and loss of productivity from patients who take time from work due to illness.

The CDC study also considered both early and late/chronic Lyme disease. The direct medical costs were obtained from insurance billing information. The remaining costs were determined through patient surveys.

One of the things they found was that loss of work productivity and non-medical costs were a huge amount (over 85%) of the cost of late Lyme disease. That’s because this disease really takes a toll on patients. Many patients are unable to work entirely and others have to cut back their work hours or change the nature of their work because of the disease.[10]

Compared to the loss of work productivity in patients with chronic Lyme disease, the cost of treatment is chump change!

As I noted, the costs in the CDC study were adjusted to reflect inflation and the CDC’s revised 300,000 case estimate. But remember, the CDC study also used medical claims data for the direct medical costs. These are outdated.

Fortunately, a recent study out of Johns Hopkins by Adrion and Aucott reviewed an enormous insurance claims data base (47 million patients) and found that Lyme disease is associated with $2,968 higher total health care costs and 87% more outpatient visits over a 12 month period. [11]

Many of these early Lyme patients (63%) developed symptoms commonly associated with late/chronic Lyme disease, such as debilitating fatigue, memory loss, pain, musculoskeletal symptoms, or peripheral neuropathy.

These patients incurred $3,798 total direct medical costs associated with Lyme disease and had 66% more healthcare visits, and 89% more emergency room visits over a 12-month period.

When we combine Adrion’s direct medical costs for early Lyme disease with the CDC’s inflation-adjusted indirect medical costs, non-medical costs and loss of work productivity for late/chronic Lyme disease, the total annual cost per person is about $25,000 ($24,909). See the table below.

At 1 million cases of chronic Lyme disease, the annual cost is roughly $25 billion and at 3 million cases of chronic Lyme disease, the annual cost is about $75 billion.

chart-chart

The same analysis can be done for early Lyme disease. Adrion’s study reported that the direct medical costs per year could be as high as $1.3 billion, using a CDC estimate of 440,000 cases per year. (CDC estimates range from 240,000 cases a year to 440,000 cases a year.)[11]

By combining these direct medical costs with the CDC’s other illness-related costs (adjusted for inflation), the total for early Lyme disease is roughly $1.11 billion based on 300,000 cases per year.

chart-chart

The annual cost of Lyme disease is becoming clearer, as our understanding of the number of cases and associated costs for early Lyme disease and late Lyme disease improves.

Today, the combined cost of early and late/chronic Lyme disease is between $26.1 billion and $76.6 billion dollars a year. The cost of late/chronic Lyme disease is the major component of these costs. The costs will continue to grow exponentially because they are driven by the following factors:

  • Too many patients are not diagnosed and treated early, when treatments are more effective;
  • Treatment failure rates for early Lyme disease are too high; and
  • Treatment failure rates for late Lyme disease are too high.

Until we address these issues in earnest, patients will continue to suffer unnecessarily and the societal costs of Lyme disease will continue to soar.

Lorraine Johnson, JD, MBA, is the Chief Executive Officer of LymeDisease.org. 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.

References

  1. Zhang, X., et al., Economic impact of Lyme disease. Emerg Infect Dis, 2006. 12(4): p. 653-60.
  2. Treib, J., et al., Clinical and serologic follow-up in patients with neuroborreliosis. Neurology, 1998. 51(5): p. 1489-91.
  3. Shadick, N.A., et al., Musculoskeletal and neurologic outcomes in patients with previously treated Lyme disease. Ann Intern Med, 1999. 131(12): p. 919-26.
  4. Shadick, N.A., et al. The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern Med, 1994. 121, 560-7.
  5. Asch, E.S., et al., Lyme disease: an infectious and postinfectious syndrome. J Rheumatol, 1994. 21(3): p. 454-61.
  6. Aucott, J.N., et al., Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? Qual Life Res, 2013. 22(1): p. 75-84.
  7. Centers for Disease Control and Prevention. CDC provides estimate of Americans diagnosed with Lyme disease each year. Press Release 2013; Available from: http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html.
  8. McGinty, J., Lyme Disease: An Even Bigger Threat Than You Think A look at why cases of the tick-borne illness are undercounted, in Wall Street Journal. June 22, 2018.
  9. Shadick, N.A., et al., The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern Med, 1994. 121(8): p. 560-7.
  10. Johnson, L., et al. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ, 2014. 2, e322 DOI: 10.7717/peerj.322.
  11. Adrion, E.R., et al., Health care costs, utilization and patterns of care following Lyme disease. PLoS ONE, 2015. 10(2): p. e0116767.

________________

**Comment**

Besides the staggering financial cost to this 21st century plague, this paper, based on estimates of treatment failure rates associated with early and late Lyme, estimates that 35-50% of those who contract Lyme will develop persistent or chronic disease.

Let that sink in.

And in the Hopkins study found 63% developed late/chronic Lyme symptoms.

For some time I’ve been rankled by the repeated CDC statement that only 10-20% of patents go on to develop chronic symptoms.  This mantra in turn is then repeated by everyone else.

While still an estimate, I’d say 35 to over 60% is a tad higher than 10-20%, wouldn’t you?  It also better reflects the patient group I deal with on a daily basis.  I can tell you this – it’s a far greater number than imagined and is only going to worsen.

Time for every number on the CDC website to be adjusted.

For more:  https://madisonarealymesupportgroup.com/2018/02/24/one-million-predicted-to-get-lyme-in-2018-in-the-u-s/

https://madisonarealymesupportgroup.com/2018/06/28/the-science-isnt-settled-on-chronic-lyme/

https://madisonarealymesupportgroup.com/2018/05/26/diagnosis-at-the-center-of-the-lyme-wars/

https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/

https://madisonarealymesupportgroup.com/2018/05/29/ld-on-the-rise-an-expert-explains-why-i-give-rebuttal/

 

Citizen Scientists Help Track Tick Borne Illness Exposure

https://www.sciencedaily.com/releases/2018/07/180712141710.htm

Who got bit? By mailing in 16,000 ticks, citizen scientists help track disease exposures

Study offers new insight into potential exposure to tick-borne diseases

Date:  July 12, 2018
Source:  Colorado State University
Summary:
A bite from a disease-carrying tick can transmit a serious, potentially fatal infection, such as Lyme disease. But many ticks go unnoticed and unreported. Now, with the help of citizen scientists, ecologists are offering better insight into people’s and animals’ potential exposure to tick-borne diseases — not just the disease reporting and prevalence that’s only tracked when people get sick.

Western black-legged ticks.
Credit: Ervic Aquino/California Department of Public Health

A bite from a disease-carrying tick can transmit a serious, potentially fatal infection, such as Lyme disease. But many ticks go unnoticed and unreported.

Now, with the help of citizen scientists, ecologists at Colorado State University and Northern Arizona University are offering better insight into people’s and animals’ potential exposure to tick-borne diseases — not just the disease reporting and prevalence tracking that only occur when people get sick.

The result is a study published in the open-access journal PLOS ONE. The team was funded by the Bay Area Lyme Foundation, a nonprofit organization dedicated to informing the public about Lyme disease and finding a cure. Foundation officials urge people to take tick bites seriously, since early detection is key to treating most conditions.

The study’s lead authors are Daniel Salkeld, a research scientist in CSU’s Department of Biology, and longtime collaborator Nathan Nieto of Northern Arizona University.

“Our study may be a new way of understanding exposure to tick-borne diseases,” explained Salkeld, a disease ecologist. “Normally the approach is to rely on reported disease cases, or to look at ticks in natural habitats. Our data represent that in-between, middle ground: It shows when people or animals got bitten, and where, and what they got exposed to.”

Salkeld and Nieto’s study examined over 16,000 ticks sent in by citizen scientists from 49 states (all but Alaska) and Puerto Rico. Nearly 90 percent of the ticks were reported to have been removed from either humans or dogs. The researchers tested for several bacteria, including those that cause Lyme disease and babesiosis. One of the pathogens they tested for, Borrelia miyamotoi, was discovered relatively recently, and is not typically tracked by public health officials.

In their data, the researchers found 83 counties, in 24 states, where ticks carrying disease-causing bacteria had never been previously documented. The scientists’ original goal was to collect about 2,000 ticks, and they expected most to come from California’s San Francisco Bay Area. The nationwide response to their experiment underscores the public’s intense interest in better understanding tick diseases.

“The overwhelming participation from residents throughout the country and the surprising number of counties impacted demonstrates that a great need exists throughout the country for this information,” said Nieto, who led the diagnostic testing of each tick received in the mail. “This study offers a unique and very valuable perspective, as it looks at risk to humans that goes beyond the physician-reported infection rates and involved ticks that were found on or near people.

The researchers stress that citizen science data has limitations; some of their findings may be tied to human error, or lack of access to information. For example, the citizen scientists reported where they lived, and where the ticks were found, but not where they had traveled recently.

Tick scientists like Salkeld and Nieto can typically collect around 100 ticks for a localized study. Inviting citizen scientists to send in ticks opened up a whole new way of seeing how such ticks are distributed, and their activity patterns. Approaches like this could lead to new insights such as how diseases spread, and new human pathogens yet to be discovered.

“For example, we could start to look at what species of ticks are active, when, and where,” Salkeld said. “And how does this differ from across the north or south, or the Midwest to California? There could be all kinds of subtle variations.”

Story Source:

Materials provided by Colorado State University. Note: Content may be edited for style and length.


Journal Reference:

  1. Nathan C. Nieto, W. Tanner Porter, Julie C. Wachara, Thomas J. Lowrey, Luke Martin, Peter J. Motyka, Daniel J. Salkeld. Using citizen science to describe the prevalence and distribution of tick bite and exposure to tick-borne diseases in the United States. PLOS ONE, 2018; 13 (7): e0199644 DOI: 10.1371/journal.pone.0199644
__________________
Related article:
  • ticks in places they weren’t supposed to be
  • ticks are born carrying disease and do not require a blood meal to pick it up 
  • ALL life stages of common ticks (deer, Western black-legged, and lone star) carry the bacteria that cases Lyme disease
  • they found Babesia in 26 counties across 10 states which
  • isn’t even a reportable illness to the public health department  
  • all of this blows holes in commonly held doctrine 

Canada is also making use of citizen scientists for the tick borne illness problem:  https://madisonarealymesupportgroup.com/2018/04/10/canadian-citizen-scientists-helping-with-tick-surveillance/

 

 

 

Learn About Advanced Cell Training – FREE – July 23

https://advancedcelltraining.com/live-call-advancedcelltraining/?utm_source=facebook&utm_medium=cpc&utm_campaign=liveq%26a&utm_term=061418

Tired of Dealing With Chronic Symptoms?

There is a new method (ACT) to help you heal from chronic symptoms, which uses your body’s ability to heal itself.  After attending the Live Q&A call, you’ll understand more.

When?  Monday, July 23 7 PM Eastern/4pm Pacific
  • Lyme
  • Back/Neck/Hip/ Joint pain
  • Depression/Anxiety/Emotional issues
  • Headaches, brain fog, dizziness
  • Allergies
  • Hair loss
  • Blurry vision
  • Leaky gut/constipation/diarrhea
  • Fatigue
  • much more

 

Get answers to your symptom-specific questions.

Call 401-398-7323 or click the button below to reserve your spot in our next Live Q&A Call. Learn how a home-based program trains your body to heal and ask ACT’s founder your questions–this call could be the best thing you do for your health!

Have questions or want to reserve your spot by phone? Call 401-398-7323 or click here if you want someone to contact you.

_________________

**Comment**

Please remember that Lyme/MSIDS is infectious and many of the symptoms are from either the active infection or the immune system’s response to the infection or dead debris.

If you are actively infected, you need antimicrobials.  ALL of my symptoms have been related to an active infection that antimicrobials took care of.  Of course we are all different but I can’t emphasize the importance of good antimicrobial treatment.  BTW:  treatment is often in the YEARS, not months or days.  

For an example of good treatment:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

There is a video in the link at the top of the article of Jane Barrows, founder of Newport Rhode Island Lyme Support Group sharing how she recovered with ACT.  Other narratives include arthritis, chronic fatigue, and Anxiety/panic attacks.

It’s very true that Lyme/MSIDS is one of the most complex illnesses known to man and is hardly straight forward.  Much depends upon what you are infected with and how your immune system handles it.  For many there is a cognitive/psychological component that should never be underestimated.  I present information such as ACT in the hopes that some will be helped.  It may not work for you, however.  Do your own homework.  And as always, please discuss all treatments with your medical practitioner.

HHS Vaccine Fraud Proven

  Real News With David Knight  Approx. 20 Min

Published July 13, 2018

Del Big Tree explains on “Real News With David Knight”  that in exchange for giving vaccine companies immunity from prosecution for adverse reaction & medical harm, the Federal government said it would take measures to monitor & improve vaccine safety. A new lawsuit by Del Bigtree shows HHS never looked at ANY safety or adverse reactions for ANY vaccine for the 31 years since they were given oversight.

Big Tree has this fact in bright purple crayon on a legal document.  This isn’t speculation.  This is fact.

For the proof:  http://icandecide.org/government/ICAN-HHS-Stipulated-Order-July-2018.pdf

Excerpt:

Whereas, on June 27, 2018, HHS sent ICAN the following response to the FOIA Request:

The [Department]’s searches for records did not locate any records responsive to your request.  The Department of Health and Human Services (HHS) Immediate Office of the Secretary (IOS) conducted a thorough search of its document tracking systems.  The Department also conducted a comprehensive review of all relevant indexes of HHS Secretarial Correspondence records maintained at Federal Records Centers that remain in the custody of HHS.  These searches did not locate records responsive to your request, or indications that records responsive to your request and in the custody of HHS are located at Federal Records Centers.  

Time to get rid of the 1986 Act 

(The 1986 Act grants economic immunity to pharmaceutical companies for injuries caused by vaccines.  (42 U.S.C. 300a a-11.)  It also makes HHS directly responsible for nearly every aspect of vaccine safety.  (42 U.S.C. 300a a-2, 300a a-27.) 

And we think HHS isn’t going to solve the Lyme/MSIDS problem?

https://madisonarealymesupportgroup.com/2018/07/18/hhs-not-to-be-trusted-with-lyme/

Go to icandecide.org for more info.

For more:  https://madisonarealymesupportgroup.com/2018/06/21/u-s-government-continues-to-pay-millions-in-vaccine-injuries-death-settlements/

https://madisonarealymesupportgroup.com/2018/03/21/congress-receives-vaccine-safety-project-details-since-the-cdc-fda-ignore-their-own-data-and-proclaim-vaccines-do-not-cause-autism/

https://madisonarealymesupportgroup.com/2018/07/10/pediatricians-state-new-who-aefi-guidelines-put-childrens-lives-at-risk-200-evidence-based-reasons-not-to-vaccinate/

https://madisonarealymesupportgroup.com/2017/09/19/autism-aluminum-adjuvant-link-corroborated/

https://madisonarealymesupportgroup.com/2018/06/01/immunoexcitotoxicity-as-the-central-mechanism-of-etiopathology-treatment-of-autism-spectrum-disorders-a-possible-role-of-fluoride-aluminum/

https://madisonarealymesupportgroup.com/2018/06/15/canadian-data-more-autism-where-vaccine-coverage-is-highest/

https://madisonarealymesupportgroup.com/2016/12/08/mercury-and-autism/

 

World’s 1st: French ME/CFS Assoc. Decides to Clinically Evaluate the CFS Pathogenisis Model With CADI Model

https://www.linkedin.com/pulse/worlds-first-french-cfs-association-decides-evaluate-manuel-gea-/

World’s first: The French ME/CFS Association decides to clinically evaluate the CFS pathogenesis model produced by Bio-Modeling Systems

Published on July 17, 2018
Manuel GEA – Bio-Modeling Systems

BMSystems has constructed a CADI™ model that, by integrating immunological dysregulations with their systemic metabolic, physiological and cognitive consequences, describes and explains the causal CFS mechanisms and their modes ofclinical progression, leading to the formulation of potential targeted treatments.

Paris, France July 10, 2018: The Scientific Committee of the French Chronic Fatigue Syndrome Association (ASFC) has decided to evaluate in clinic the CADI™ (Computer Assisted Deductive Integration) model of CFS pathogenesis mechanisms produced by Bio-Modeling Systems (BMSystems) to bring novel diagnostic and therapeutic strategies faster to patients. The two organizations will combine their competencies to improve understanding of the physiopathology and to accelerate treatment discovery for this poorly served, debilitating disorder for which challenges are considerable and therapeutic approaches non-satisfactory. To this end, the partners have launched an innovative research program which combines the scientific and clinical know-how of the Scientific and Medical teams attached to the Association with BMSystems’ heuristic CADI™ Discovery modeling platform and the scientific talents of its team of biologists.

More specifically, BMSystems has constructed a CADI™ model that, by integrating immunological dysregulations with their systemic metabolic, physiological and cognitive consequences, describes and explains the causal CFS mechanisms and their modes of clinical progression, leading to the formulation of potential targeted treatments. The purpose of this collaboration is to evaluate in the clinic the CADI™ model’s predictions and open new avenues that will be decisive for the understanding, the diagnosis and the treatment of the disease. The CADI™ model construction was entirely self-financed by BMSystems, revealing its confidence to jointly identify and characterize mechanisms that will quicker provide specific combined therapies to the patients.

The scientific program is placed under the shared leadership of Pr. Jean-Dominique de Korwin (Department of Internal Medicine, University Hospital of Nancy, Lorraine University) President of the Scientific Committee of the ASFC, Dr. François Iris, founder & CSO of BMSystems and Dr. Thanos Beopoulos, Integrative Biologist at BMSystems.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a major, yet severely under-estimated public health burden that needs novel, disruptive conceptual reconsideration that can drive the renewal and the evolution of therapies.

About ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome remains a debilitating condition for the patient and a confusing one for the physicians, both because of diagnostic difficulties and poorly codified management. Despite numerous studies, its pathophysiology remains unclear, but a multifactorial origin is suspected with triggering (infections) and maintenance (psychological) factors as well as the persistence of inflammatory (low-grade inflammation, microglial activation…), immunologic (decrease of NK cells, abnormal cytokine production, reactivity to a variety of allergens, role of estrogens…) and muscular (mitochondrial dysfunction and failure of bioenergetic performance) abnormalities at the origin of multiple dysfunctions (endocrine, neuromuscular, cardiovascular, digestive…). The frequency of CSF is variously appreciated, depending on the criteria of definition, with prevalence between 0.2 and 2.6% in Western countries. The ratio of women to men is 4/1, with predominance in young adults (20-40 years) but with possible attack at any age and a genetic predisposition. Between 836,000 and 2.5 million Americans and between 150,000 and 300,000 French people would suffer from CFS with often severe degrees of disability generating high health costs and distress.

About Bio-Modeling Systems (BMSystems):

Bio-Modeling Systems, an innovative company founded in 2004, is the first and, to date, only company to successfully create in-silico heuristic models validated in-vivo. BMSystems’ models have been built by its biologists using an integrated IT solution called CADI ™ (Computer Assisted Deductive Integration) and have led to discoveries and patents in the fields of infectious diseases, oncology, neurology, psychiatry, dermatology, immunology, metabolic disorders, innovative bioprocesses for industrial biotech and the creation of new companies exploiting these patents. BMSystems’ models describe the biological phenomena involved in pathological states and provide novel mechanistic integrations to explain the cause of certain diseases, identify and select predictive biomarkers, offer new combinations of molecules and new therapeutic strategies, thereby contributing to the development of Mechanism-Based Medicine.

For more information and access to presentations & publications, please visit http://www.bmsystems.net.

About the French Chronic Fatigue Syndrome Association (ASFC):

ASFC is the only association representing patients with ME/CFS approved by the French Ministry of Health in 2015. The association provides a phone hotline and organizes regular meetings between patients and volunteers everywhere in France, and an annual meeting with expert scientists. ASFC welcomes everyone suffering from unexplained chronic fatigue and ME/CFS, informs and refers them to specialized centres for an accurate diagnosis. The main missions of the Scientific Council are to inform and advise the ASFC on the development of knowledge on ME/CSF and patient care, to propose research protocols and strategic directions for recognition of ME/CFS in France.

President of ASFC: Mr. Robert SCHENK

Members of the Scientific Committee of the ASFC involved in the project: Pr. François-Jérôme AUTHIER, Pr. Ingrid BANOVIC, Dr. Grégoire COZON (PhD), Dr. Stéphane DELLIAUX (PhD), Mrs Isabelle FORNASIERI (PhD), Dr. Alaa GHALI, Pr. Yves JAMMES, Mrs Emmanuelle JOUET (PhD), Pr. Jean-Dominique de KORWIN, Pr. Bernard LEBLEU, Dr. Frédérique RETORNAZ.

For more information, please visit http://www.asso-sfc.org

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**Comment**

There is no doubt in my mind that technology like this will be the wave of medicine.  I’m no expert on ME/CFS but regarding Lyme/MSIDS, psychiatric issues need to be put in the equation.  

Also, this technology is only as good as those inputting the markers and in the case of Lyme/MSIDS there is a vast polarization in the medical community of those who believe it to be a benign illness cured by 21 days of doxycycline and those who believe it can infiltrate every organ of the body eventually leading to death without proper long-term treatment.  Technology must include all sides and it must adapt and change to new information.

My only other concern is that doctors use this as only one of many tools in their differential diagnoses because particularly with Lyme/MSIDS, people fall through the cracks due to “atypical” or “rare” presentations.  In my experience these aren’t “atypical” or “rare” at all but have simply not been reported on – therefore, doctors and researchers just aren’t aware of them.  In the case of Lyme/MSIDS the worst thing a researcher could use would be old Lyme/MSIDS research (and yes, even new meta-analysis from past research) as that would only represent the Lyme Cabal and their pigeon-holing this complex illness into a square of their own making which leaves out a huge chunk of suffering patients.  They also smugly state that this chunk is only 10-20% of patients.  I say the percentage is much higher and is growing daily.

 

Rutgers Racing to Contain Asian Longhorned Tick

https://www.nj.com/news/index.ssf/2018/07/this_is_how_dna_helps_rutgers_scientists_crack_the.html

It spreads SFTS (sever fever with thrombocytopenia syndrome), “an emerging hemorrhagic fever,” causing fever, fatigue, headache, nausea, muscle pain, diarrhea, vomiting, abdominal pain, disease of the lymph nodes, and conjunctival congestion, but the potential impact of this tick on tickborne illness is not yet known. In other parts of the world, this Longhorned tick, also called the East Asian or bush tick, has been associated with several tickborne diseases, such as spotted fever rickettsioses, Anaplasma, Ehrlichia, and Borrelia, the causative agent of Lyme Disease.

For a 2016 literature review on SFTS: http://infectious-diseases-and-treatment.imedpub.com/research-advances-on-epidemiology-of-severefever-with-thrombocytopenia-syndrome-asystematic-review-of-the-literature.php?aid=17986
Although the clinical symptoms of SFTS and HGA are similar to each other, but the treatment methods of the two diseases are totally different. Doctors notice that the biggest difference between the clinical symptom of SFTS and HGA is that SFTS patients generally without skin rash, the dermorrhagia is also not seriously, and few massive hemorrhage cases were reported [23]. It is also reported that SFTS patients had gastrointestinal symptoms, such as nausea, vomiting, and diarrhea, which are rarely observed in HGA patients [2]. So these differences can be used as the auxiliary basis of differential diagnosis.
At present, there is still no specific vaccine or antiviral therapy for SFTSV infection. Supportive treatment, including plasma, platelet, granulocyte colony stimulating factor (GCSF), recombinant human interleukin 11, and gamma globulin is the most essential part of case treatment [44]. Meanwhile, some measures were taken to maintain water, electrolyte balance and treat complications are also very important.
Ribavirin is reported to be effective for treating Crimean-Congo Hemorrhagic Fever (CCHF) infections and hemorrhagic fever with renal syndrome, but it is still inadequate to judge the effect of ribavirin on SFTS patients because of the study limitation without adequate parameters were investigated [45]. Host immune responses play an important role in determining the severity and clinical outcome in patients with infection by SFTSV.
For Viral treatment options: https://madisonarealymesupportgroup.com/2016/03/28/combating-viruses/

And lastly, please know ticks parasitize one another, potentially spreading all manner of diseases to humans.  This fact also shoots holes in the regurgitated mantra that only certain ticks carry certain pathogens.  If they are feasting on one another, they can potentially infect each other and then us:  https://madisonarealymesupportgroup.com/2018/03/07/tick-bites-tick-hyperparasitism/