Friday, 27 July 2018

WORLD HEALTH ORGANISATION RECOGNISES SERIOUS AND POTENTIALLY FATAL CONSEQUENCES OF LYME DISEASE THAT OUR GOVERNMENTS IGNORE.
























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The World Health Organization’s (WHO) International Classification of Diseases (ICD) are used globally to diagnose, treat and undertake surveillance of disease and injuries.

The ICD codes were recently revised and the ICD11 Report was formally adopted in June 2018 by the United Nations and its implementation will begin in 2019.

The US Federal Tick-Borne Disease Working Group’s draft Report to Congress was released to the public in July 2018.

The WHO document recognizes three significant, potentially fatal complications from Lyme borreliosis. In contrast, these serious complications are missing or minimized in the Tick-Borne Disease Working Group’s draft 2018 Report to Congress.

WHO ICD11 Process

WHO has recognized Lyme borreliosis to be a ‘disease of consequence’ since the 1990s. Nevertheless, despite improved practices of transparency for the ICD11 revisions, the subject of Lyme borreliosis was uniquely shrouded in secrecy.

In fact, WHO has not had a publicly-acknowledged Topic Advisory Group assigned to review Lyme borreliosis since 1993.

The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes. WHO verified acceptance of the Ad Hoc Committee’s Report UPDATING ICD11 Borreliosis Diagnostic Codes, Edition One: March 29, 2017. This Report provided comprehensive recommendations on how the codes should be updated.

In June 2017, members of the Ad Hoc Committee, with renowned scientist Judith Miklossy, shared these concerns and documentation regarding Lyme and dementia directly with Dr. Shekhar Saxena, the senior WHO official responsible for addressing dementia.

The Ad Hoc Committee also met with Dainius PÅ«ras, the United Nations (UN) Special Rapporteur on the right to health. The report UPDATING ICD11 Borreliosis Diagnostic Codes, Edition One: March 29, 2017 was entered into record by the Special Rapporteur. This meeting focused on Lyme borreliosis ICD code issues that:

×    appeared to be largely based on science that is rife with conflicts of interests (COIs) and promoted by the Infectious Diseases Society of America (IDSA)

×    ignored many of the serious and potentially fatal complications from the disease

×    contributed to human rights abuses across the globe

These meetings were followed by on-going media campaigns to inform the public, government and UN officials on the shortfalls of the Lyme borreliosis ICD codes.

Governments’ Actions on Lyme Borreliosis

Meanwhile, the governments of Canada, the United Kingdom, Ireland and the USA developed treatment Guidelines and/or key policy documents for Lyme borreliosis during the ICD efforts by the Ad Hoc Committee.

These policy documents, including the Tick-Borne Disease Working Group’s 2018 draft Report to Congress, ignore and/or minimize:

×    Congenital Lyme borreliosis

×    Dementia due to Lyme Disease

×    Central Nervous System demyelination due to Lyme borreliosis

These policy documents, supposedly developed with stakeholder input, failed to integrate the public comments and scientific publications that describe these debilitating, disabling and potentially fatal complications from Lyme borreliosis.

These documents have either ignored the robust peer-reviewed material describing these conditions and/or based their publications on science that is rife with COIs and promoted by the IDSA. In many cases, recommendations related to these potentially fatal complications were restricted to ‘requires more study.’

These documents also emphasize a syndrome that has never been validated, known as the Post Treatment Lyme Disease Syndrome (PTLDS). PTLDS is presented as part of a mix of terms that includes ‘an illness all in the patients’ heads’ on page 75 of the 2018 draft Report to Congress.

The draft Report makes multiple use of the PTLDS term to refer to 'complications from Lyme infection' yet also states ‘This report does not represent a particular stance on these issues’ (page 75).

Furthermore, the draft Report references articles authored by the Tick-Borne Disease Working Group’s Chair John Aucott. Since assuming his post as Chair, Aucott has published multiple articles promoting PTLDS. On page 104 of the draft Report, his article links PTLDS to the psychosomatic condition referred to as ‘medically unexplained syndrome’ or MUS.[1]

Why does Chair Aucott conflate MUS with PTLDS? Does the Chair Aucott not know that MUS has been repudiated by the American Psychiatric Association and deleted from the DSM-5?

Or, does this conflation have anything to do with Aucott’s patent for CCL19, a biomarker diagnostic he claims can be used to determine PTLDS? [2]

Conclusions

Regardless of what the answers to these questions are, a couple of things are very clear.

The Ad Hoc Committee efforts to update the Lyme borreliosis ICD codes were serendipitous because many persons in the UN system have friends and family devastated by this disease. Fortunately, the BETA platform was open for global review, and the initial rejection of Ad Hoc Committee’s recommendations were revisited.

The ICD11 codes recognize some previously ignored complications from Lyme borreliosis. Among other previously un-elaborated codes for the disease, the new codes include these potentially fatal complications:

×    1C1G.2 Congenital Lyme borreliosis

×    6D85.Y Dementia due to Lyme Disease (Dementia due to other specified diseases classified elsewhere)

×    8A45.0Y Central Nervous System demyelination due to Lyme borreliosis (Other Specified white matter disorders due to infections)

Furthermore, there is additional flexibility under the ‘Coding Note’ for Lyme borreliosis:

×    Use additional code if desired, to identify any associated condition.

×    Use additional code, if desired, to identify any sequelae.

×    “The extension code 'Cause of late effect' is used in addition to both codes to show the relationship between the causative condition and the resulting sequelae.

This means that immediate complications or sequelae (later complications) from Lyme infection can be identified and attached to the Lyme borreliosis code and used to show relationship to the infection.

One Last Observation

The ICD11 codes were developed in a collaborative manner with most countries represented. The Lyme borreliosis ICD codes present an understanding of the disease that is missing from multiple governmental and medical society Lyme Guidelines and the 2018 Draft Report to Congress.

The Tick-Borne Disease Working Group claims,

“The international community is looking to the United States for leadership, science, and innovation on how best to address tick-borne diseases.” [see page 81 of 2018 draft Report to Congress].

Unfortunately, for Lyme borreliosis, this US leadership cannot be found in the Tick Borne-Disease Working Group, the Centers for Disease Prevention and Control (CDC), the National Institute of Health (NIH) or the IDSA.

There are many officials and medical and scientific professionals across the globe who follow the biased science promoted by the IDSA, CDC and NIH. The Lyme Guidelines developed by the Canadian, UK and Irish governments and the Tick-Borne Disease Working Group’s 2018 draft Report all share this science that is riddled with COIs.

However, in key institutions like WHO, the truth of this disease is starting to overcome the propaganda.

The WHO’s ICD11 Lyme borreliosis codes clearly make fools of many.

Extracts from Jenna Luche-Thayer - for further information on this and into the investigations with United Nations on the human rights abuse of Lyme patients and their treating doctors can be read on Jenna's LinkedIn account  https://www.linkedin.com/in/jenna-luche-thayer-b75b902b/detail/recent-activity/posts/ 


Tuesday, 10 July 2018

MULTIPLE SCLEROSIS AND INFECTION


'Dr. Gabriel Steiner had clearly shown that in about one in every ten brain-autopsies he could find spirochetes using his own silver-stain. We still use Steiner’s stain today to detect spirochetes, but for some reason we don’t acknowledge his discovery of spirochetes being associated with Multiple Sclerosis.' 

https://durayresearch.wordpress.com/about-2/seven-provocative-findings-p5/

Further images of spirochetes from Steiner's work   




The early history of MS and the MS society.


There is a whole history between Dr. Gabriel Steiner, Dr. Rose Ichelson and the MS society and Time magazine.
I wrote up the story on an old computer in 1992. Seems lost to the ages.

The story is basically is this: Dr. Steiner associates spirochetes in the brains of deceased MS patients in Germany in 1922 to 1933
Dr. Steiner is Jewish so he leaves Germany for Ann Arbor Michigan. Dr. Steiner is a revered teacher and takes on several graduate students. One of is students is Lida Mattman.
Dr. Steiner publishes only three more major papers in America on MS that associates spirochetes with MS. 1952-1956
Dr. Steiner worked on American MS patients and after finding spirochetes in American MS patients 1952, Dr. Steiner wrote a position paper on MS and named the spirochete myelaphthora or myelin-eating spirochete.
Steiner went on to state that he thought it was an entirely new species Borrelia.
At first the American medical community was excited,but the tide changed quickly. People who didn't understand science had the last word in a Time Magazine article in 1957.
Dr. Rose Ichelson was a microbiologist with 30+ years of experience, a woman who stopped two epidemics in Philadelphia and was mentioned by Eleanor Roosevelt as a female scientist that young girls should emulate.
Dr.Ichelson read Steiner's work with great interest.
Rose on several occasions cultured spirochetes from the CSF of MS patients and then published in 1956.
She gained the attention of TIME magazine who did an article in 1957.
That same year the inexperienced MS society was formed and was run by none scientists. They said MS was not caused by an infection because rarely did both identical twins or spouses get MS, therefore no infection was being passed. (Of course the infection is not passed from person to person but from TICKs to people.)
This statement shattered Dr. Ichelson's career and she was openly ridiculed, in a large part her struggle was because of her jealous boss, who literally stole a research grant out from under Rose to do his virus theory of MS.
Thus ending Rose's career in ridicule and internal politics. She died a few years later and all her lab books and papers were lost in a Philadelphia Town Hall fire.
The final insult from the MS society was ironically that the MS society after saying MS was not caused by an infection , they wholeheartedly embraced the Virus-theory of MS as put forth by Rose's ex boss.
Dr. Rose Ichelson PhD should be honored much in the same way Rosaline Franklin (DNA) is honored with an annual science award for research.Why Philadelphia doesn't wake up and make a statue of her I don't understand.

https://molecularsolution.wordpress.com/2011/02/20/spirochetes-found-in-multiple-sclerosis-patients/ ( a list of numerous published studies on spirochetes and MS)

The above was copied from Thomas Grier Facebook post with his permission to share. (https://www.facebook.com/thomas.grier1 )

To learn more about the association of MS and other illnesses with Borrelia go to - Dr. Paul Duray Research Fellowship Endowment  https://durayresearch.wordpress.com/ 

with special attention to - https://durayresearch.wordpress.com/about-2/seven-provocative-findings-p5/

Wednesday, 13 June 2018

CHRONIC LYME DISEASE -THE DISEASE NICE DOESN'T RECOGNISE




An excellent presentation from Dr Kenneth Liegner well worth listening to, discussing so much detailed information historic and present.
Kenneth's comment on my Facebook post- 'You are welcome. What is going on worldwide must be framed in terms of Human Rights issues - and - corruption in the Health Care Sector.'





Another excellent presentation from the same conference Dr Brian Fallon


Part 1 of 4 of the Lyme Society’s Tick-Borne Disease Education Conference with Brian Fallon, MD from Andy Levison on Vimeo.


Other excellentpresentations

Dr Robert Bransfield  http://smoothshots.com/video/271963870


and Pat Smith https://vimeo.com/271989760?from=outro-embed

Monday, 12 March 2018

BREAKTHROUGH IN FRANCE FOR TREATING CHRONIC LYME PATIENTS

Plan Lyme: Christian Perronne announces "a big step forward" for the sick

From La Montague on their front page  please go to this link ad translate to read the full article 

https://www.lamontagne.fr/clermont-ferrand/sante/2018/03/11/plan-lyme-christian-perronne-annonce-une-grande-avancee-pour-les-malades_12768540.html


extracts -
'The national protocol for diagnosis and care promised in the Lyme plan, launched in September 2016 by Marisol Touraine, then Minister of Health, will be unveiled in the coming weeks.For the patients as for the doctors, it will be "a big advance", promises professor Christian Perronne, specialist of the Lyme disease and member of the working group in charge of elaborating the new recommendations.'

'Since June, there have been new scientific references proving the existence of chronic Lyme disease, so I will insist on that. There are also known publications, which I did not highlight enough last year, and which show the persistence of clinical signs in many patients after the official three weeks of antibiotics. There are at least fifteen publications that find Borrelia bacteria in men who have received short-term treatment. All data overlap, so can not say that chronic Lyme does not exist.'


'there will be no maximum for the duration of an antibiotic treatment. It will be left to the discretion of the doctor. You can not set a maximum for the simple reason that there has been no research on Lyme for thirty years. We have no data, all the studies that have been done have been limited to three months. Now, we will be able to monitor patients, record practices, see what works best ... It was the goal of the working group, frame what is being done to try to evolve. Our approach is pragmatic, it leaves the door open ... And it suits me well.'

'"It is common not to see a 100% permanent cure," notes Professor Perronne. "We see people who always keep a little tired, we see others who resume a normal life, but who have seizures, more or less long, more or less regular.They are tired, they have disorders of the memory ... "It shows that the Borrelia is still there, even if it is under control".'

Thanks to Isabelle Vachias For this excellent article

Bravo France for leading the World in the treatment of Lyme Disease.
Heartfelt Thanks to Prof Christian Perronne for his dedicated work.
Previous posts can be found https://lookingatlyme.blogspot.co.uk/search?q=Perronne

Wednesday, 21 February 2018

BREACHES OF GUIDELINE DEVELOPMENT RULES BY NICE - LYME DISEASE


Breaches of Guideline development rules by NICE and members of the Guideline Development Committee for NG10007, Lyme disease

from  Vector-Borne Infection Research-Analysis-Strategy February 2018

NICE break their own rules On September 25th 2017, in a betrayal of public trust and in breach of their own official rules, NICE pre-emptively published comments about the draft Lyme disease guideline, which the public and medical professionals would reasonably believe to be reliable and authoritative. Whereas the draft was not ready for use, contains serious errors and omissions, was based on a minimal amount of poor quality evidence and was entirely unfit for purpose. 
The Chairman of the Guideline Development Committee (GDC) for Lyme disease, Professor Saul Faust, is quoted in numerous articles in newspapers, journals and online - including Twitter, misrepresenting the draft version, as though it is valid, authoritative and ready for use by doctors and patients. 4 Furthermore, Professor Gillian Leng, Deputy Chief Executive Officer at NICE, has participated in this breach of protocol by adding her official opinions and endorsement to these incomplete guidelines. The expected publication date for the guidelines is April 4th, 2018. The purpose of publishing the draft was supposedly to allow a 6 week period for Stakeholders to evaluate the document and provide comments and evidence to be considered by NICE before producing the final version for use


Professor Gillian Leng - Deputy Chief Executive of NICE 
A small selection of statements appearing in the media and NICE’s own website quoting Professor Leng, published on the same day that the DRAFT guideline was released for stakeholder review

We are unaware of any information that Professor Leng is an expert on Lyme disease, and question the appropriateness of her unqualified public statement that, “Lyme disease is easy to treat”. The draft guideline shows clearly that there was a minimal amount of evidence available for making treatment recommendations, none of which was UK based and all of which was of ‘low’ or ‘very low quality’. Professor Leng must therefore have access to some privileged and undisclosed source of knowledge about the treatment of Lyme disease, enabling her to supersede the actual content of the draft guideline. 

This is not “transparency”. Due to pre-emptive and exclusive media exposure, Professor Leng’s comment now constitutes an official opinion and assurance by a NICE senior officer, preempting alternative views and evidence which could be provided by Stakeholders, individual members of the NICE GDC, etc. The general public, 6 patients, medical professionals and even Stakeholder Groups could hardly be blamed for accepting and trusting information provided by the NICE Deputy Chief Executive. Yet Professor Leng’s unqualified statements could result in foreseeable and serious harm to those patients whose Lyme disease is not ‘easy to treat’.


Professor Saul Faust - Chairman of the NICE Guideline Development Committee for Lyme disease A small selection of statements in national newspapers, health related magazines and online, quoting Professor Saul Faust, published on the same day that the DRAFT guideline was published for stakeholder review

If Professor Faust wished to avoid ‘confrontational politics’ it would have made more sense for him not to make misleading remarks on a subject he clearly does not understand. Firstly, the numerous points of argument around Lyme disease, are not disagreements between ‘scientists and patients’, that is misleading and is in fact, indulging in ‘confrontational politics’. The disagreements are between on the one hand; scientists and doctors, and on the other hand; other scientists and doctors. 

Patients, some of whom have already lost everything to Lyme disease, have every right to participate in these debates that directly impact on their health and wellbeing – just as they have the right to participate in the development of the Lyme disease guideline produced by NICE. 

Professor Faust’s statement implies that some patients are in conflict with scientists per se. This indicates bias against the credibility of patients and patient campaign groups, whose views he evidently considers to be inferior with the implication that they must be irrational. He also considers patients to be too stupid to be able to discriminate between ‘unscrupulous private providers’ and legitimate practitioners. Exactly how Professor Faust formed this derogatory view of patients and patient campaigners is unknown to us, as he does not appear to have any dealings with Lyme disease patients. Therefore it appears that the Chairman of the GDC has been influenced by some ‘unscrupulous private provider’ of misleading information about patients, and is now prejudiced against a very large number of the very patients who are supposed to be helped by the NICE guideline. This back-door psychologisation of patients and campaigners may have originated from Public Health England (PHE). In a document prepared by PHE of which Dr Tim Brooks was a co-author and who is currently a NICE GDC member, and submitted to the Health and Safety Executive (HSE), are these remarks: (http://www.hse.gov.uk/aboutus/meetings/committees/acdp/161012/acdp_99_p62.pdf 


The draft only specifies the use of insensitive tests while misrepresenting their reliability – for newly presenting patients. Patients over the past 30+ years who were not investigated and denied a diagnosis and treatment because they never had a blood test, or had a negative blood-test, are not even considered, even though some of those chronically infected patients will have suffered decades of ill health. These patients must have been diagnosed with something. But NICE have evaded this entire issue. 

Even for new patients, the insensitive tests will predictably lead to a substantial proportion of infected patients getting a delayed diagnosis and others not getting diagnosed at all. NICE claim to produce ‘evidence-based’ guidelines. 

In the case of Lyme disease they have proffered a draft guideline based on smoke and mirrors and produced by a committee whose Chair evidently has a negative view of patients, and ‘experts’ who apparently believe that a laboratory test Sensitivity of 41% can be represented as “high sensitivity” with no qualifications. 

There is no excuse for deceiving doctors, patients, the public and the government about the unreliability of serological tests for Lyme disease. Objective facts do not require propaganda. Sensitivity figures are stated as a percentage and do not require interpretation or exaggeration. 

A credible Stakeholder Consultation should not be pre-empted by publication of official endorsements for a draft that is entirely unfit for purpose. 

A Guideline Development Committee should be unbiased and objective. 

The Guideline Committee and draft NICE guideline for Lyme disease fails in regard to all these requirements and more. 

We request that the publication of the Guidance is cancelled and the GDC discharged.

Please go to this link for full details
 http://counsellingme.com/VIRAS/VIRAScomplaintNICE.pdf  

INTERVENTION NECESSARY ON NICE LYME DISEASE GUIDELINE



Petition to The Secretary of State for Health
We hereby petition The Secretary of State for Health (SoSH) to intervene and to give direction to The National Institute for Health and Care Excellence (NICE) to review and modify its guideline methodologies and procedures with respect to the forthcoming guideline GID-NG10007; Lyme Disease (Lyme Guidelines), due for publication on 4 April 2018, as the current standards represent a significant failure in the performance of its functions.
The Lyme Guidelines if published, will necessarily mean that the SoSH is failing in his duties and they will:
(a) contravene NICE’s own remit with respect to reducing uncertainty in all respects of prevention, patient management and treatment. The data clearly does not represent the Lyme disease patient population, as a whole, and as such it will not improve patient health or outcomes; and
(b) due to shortcomings and an unwillingness, to date, to revise the process, it will inadvertently fail to respect, protect or fulfil patients’ human rights under the following UN treaties (as detailed in Joint Fact Sheet WHO/OHCHR/323):
International Covenant on Economic, Social and Cultural Rights (ICESCR), 1966 Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), 1979
Convention on the Rights of the Child (CRC), 1989
European Social Charter, 1961
and under the Human Rights Act 1998; and the Lyme Guidelines certainly do not “reflect the values of society” to which NICE are committed
Click on the link below to read the detail in this petition that explains why lives will be put at risk.

Please sign this important petition 
https://www.change.org/p/secretary-of-state-for-health-of-the-united-kingdom-petition-to-the-secretary-of-state-for-health-uk-re-nice-guidelines-on-lyme-disease

Friday, 29 December 2017

DRUG DISCOVERY METHODS FOR CHRONIC LYME DISEASE

“Our goal is to find alternatives to antibiotics to treat Lyme disease, which is caused by the Borrelia burgdorferi bacterium, and illnesses that arise from the Bartonella pathogen,” said Neil Spector, M.D., the Sandra Coates Associate Professor Breast Cancer Research at Duke Cancer Institute and the study’s co-principal investigator.
“We’re hoping to move from isolating targets to identifying potential drugs to testing in animal models within three years – so a very aggressive timeline,” said Spector, who was a Lyme patient himself and nearly died from complications of disease. “Our goal is to identify drugs that will target the Achilles’ heel of these pathogens while sparing the normal gut microbiome.”

Lyme Study Uses Drug Discovery Methods That Have Fueled Cancer Breakthroughs

Labs at Duke and other academic centers collaborate to identify alternatives to antibiotics