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

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



CHRONIC PERSISTENT LYME DISEASE IN NON HUMAN PRIMATES

Two important new studies :-

Variable manifestations, diverse seroreactivity and post-treatment persistence in non-human primates exposed to Borrelia burgdorferi by tick feeding


Abstract

The efficacy and accepted regimen of antibiotic treatment for Lyme disease has been a point of significant contention among physicians and patients. While experimental studies in animals have offered evidence of post-treatment persistence of Borrelia burgdorferi, variations in methodology, detection methods and limitations of the models have led to some uncertainty with respect to translation of these results to human infection. With all stages of clinical Lyme disease having previously been described in nonhuman primates, this animal model was selected in order to most closely mimic human infection and response to treatment. Rhesus macaques were inoculated with Bburgdorferi by tick bite and a portion were treated with recommended doses of doxycycline for 28 days at four months post-inoculation. Signs of infection, clinical pathology, and antibody responses to a set of five antigens were monitored throughout the ~1.2 year study. Persistence of Bburgdorferi was evaluated using xenodiagnosis, bioassays in mice, multiple methods of molecular detection, immunostaining with polyclonal and monoclonal antibodies and an in vivo culture system. Our results demonstrate host-dependent signs of infection and variation in antibody responses. In addition, we observed evidence of persistent, intact, metabolically-active Bburgdorferi after antibiotic treatment of disseminated infection and showed that persistence may not be reflected by maintenance of specific antibody production by the host.


Late Disseminated Lyme Disease: Associated Pathology and Spirochete Persistence Post-Treatment in Rhesus Macaques


Abstract

Non-human primates currently serve as the best experimental model for Lyme disease due to their close genetic homology with humans and demonstration of all three phases of disease following infection with Borreliella (Borrelia) burgdorferi (Bb). We investigated the pathology associated with late disseminated Lyme disease (12 to 13 months following tick inoculation) in doxycycline-treated (28 days; 5mg/kg, oral, 2x/day) and untreated rhesus macaques (Rm). Minimal to moderate lymphoplasmacytic inflammation, with a predilection for perivascular spaces and collagenous tissues, was observed in multiple tissues including the cerebral leptomeninges, brainstem, peripheral nerves from both fore and hind limbs, stifle synovium and perisynovial adipose tissue, urinary bladder, skeletal muscle, myocardium, and visceral pericardium. Indirect immunofluorescence assays (IFA) combining monoclonal (outer surface protein A) and polyclonal antibodies were performed on all tissue sections containing inflammation. Rare morphologically intact spirochetes were observed in the brains of two treated Rm, the heart of one treated Rm, and adjacent to a peripheral nerve of an untreated animal. Borreliaantigen staining of probable spirochete cross-sections was also observed in heart, skeletal muscle, and near peripheral nerves of both treated and untreated animals. These findings support the notion that chronic Lyme disease symptoms can be attributable to residual inflammation in and around tissues that harbor a low burden of persistent host-adapted spirochetes and/or residual antigen. 

Various reports of this study give details - 
Tulane University announcement -

Study finds Lyme bacteria can survive antibiotic treatment months after infection

Outbreak news Today -

Lyme disease: Borrelia burgdorferi survive 28-day course of antibiotics months after infection, according to study


Lyme Disease.org 

 New study finds Lyme bacteria survive a 28-day course of antibiotics



An excellent in depth look can also be found here- http://counsellingme.com/VIRAS/Embers.html








LAWSUIT FOR LYME DISEASE

'A lawsuit asserts that the design and implementation of Lyme disease care–as outlined in the treatment guidelines of the Infectious Diseases Society of America—is rooted in corruption.' 

Mary Beth Pfeiffer is an investigative journalist and writes for the Huffington Post her recent article - 10 points about suing the architects of Lyme policy - as a task force meets to review it.


To read the full article go to this link -
 https://www.huffingtonpost.com/entry/10-points-about-suing-the-architects-of-lyme-policy_us_5a2764bbe4b0650db4d40bb5