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15 février 2017 3 15 /02 /février /2017 21:51

Nouveau test : http://www.tickplex.com/ projet test lyme disponible d'ici quelque semaines !!

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15 février 2017 3 15 /02 /février /2017 08:06

https://m.youtube.com/watch?feature=youtu.be&v=h7_zu0eYGwg

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14 février 2017 2 14 /02 /février /2017 15:44

Agenda des prochaines  formations Maladie de  Lyme  et MVT

 

- Mercredi  22, jeudi 23 et vendredi 24 février 2017 :   VALENCE, niveau 1, 2  et 3   (Dr Ph RAYMOND)

- Jeudi  9, vendredi 10 et samedi 11 mars 2017, LILLE, niveaux 1, 2 et 3  (Dr Ph RAYMOND)

- Vendredi 21 et samedi  22 avril 2017 : PARIS,  niveaux 1+2  (Dr Claire DELVAL)

- Vendredi 28 avril   2017, AIX EN PROVENCE,  niveau 1  (Dr Ph RAYMOND)

- Jeudi 26 avril , soirée, NANCY, biologie (Lionel CHAPY)

- Vendredi  28 et samedi  29 avril 2017, NANCY,  niveau 1 et 2  (Dr Claire DELVAL)

- Mercredi  10 , jeudi 11, et vendredi 12 mai  2017 :  VALENCE, niveaux 1, 2  et 3   (Dr Ph RAYMOND)

- Vendredi  19 mai et samedi  20 mai 2017: CONGRES ILADS  PARIS

- Vendredi  9 et Samedi  10 Juin 2017, SAINT MALOniveaux 1  + 2  (Dr Y  DJONOUMA)

- Lundi 12, mardi 13 et mercredi 14 juin 2017, BELGIQUE, niveaux 1, 2 et 3   (Dr Ph RAYMOND)

- Jeudi  22 juin,  vendredi  23  juin,  AURILLAC , niveaux 1  + 2   (Dr Ph RAYMOND)

- Jeudi  6, Vendredi 7 et samedi 8 juillet 2017 , BELGIQUE, niveaux 1, 2 et 3   (Dr Ph RAYMOND)

- Vendredi  29 et Samedi  30  septembre 2017, MONT ST MICHEL  niveaux 1  + 2  (Dr  Youssouf  DJONOUMA)

- Jeudi  5 octobre 2017, LYON, niveau  1   (Dr Ph RAYMOND)

- Mercredi 11, Jeudi 12, et Vendredi 13 octobre 2017 :  VALENCEniveaux 1, 2  et 3  (Dr Ph RAYMOND)

- Octobre  2017 : ANNECY  niveau 2 (date à préciser) (Dr Ph RAYMOND)

- Mercredi 15, Jeudi 16, et Vendredi 17 novembre 2017 :  VALENCEniveaux 1, 2  et 3  (Dr Ph RAYMOND)

- Vendredi  24 et Samedi   25 novembre 2017, NANTESniveaux 1 + 2  (Dr Y DJONOUMA)

- Jeudi  30 novembre 2017, LYON, niveau  2  (Dr Ph RAYMOND)

- Jeudi  11 janvier 2018, LYON, niveau   3  (Dr Ph RAYMOND)

 

 

 

 

Si l’une de ces dates vous intéresse , merci de me contacter par email : ph.raymond@free.fr

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13 février 2017 1 13 /02 /février /2017 13:51


Depuis six ans, Pauline se bat contre la maladie de Lyme depuis six ans.


Pauline Villa est étudiante en BTS 2 ACSE au lycée de la Vinadie Animapôle, afin de devenir commerciale agricole.

Mais à l'heure où tant d'autres à son âge croquent la vie à pleines dents, elle, doit faire face à la maladie de Lyme.

Une affection insidieuse et grave, qui la laisse parfois sans énergie, dans de longues phases d'abattement.

En compagnie de trois amies étudiantes, elle a décidé de se battre, et de faire connaître sa maladie.

Conseillées par leur enseignante éducatrice socio-culturelle Martine Pradié, elles ont décidé de réunir tous les élèves du lycée agricole, pour leur parler de cette maladie, et de l'association «Lyme sans frontières».

«C'est à 15 ans que j'ai contracté la maladie, explique Pauline. Je ressentais une grosse fatigue, j'avais des fourmillements dans les jambes, des troubles de la vision, des pertes de mémoire. Un peu de mal à parler également. J'avais fait une chute de cheval et le neurologue consulté m'avait diagnostiqué une mononucléose».

Durant cinq ans rien n'avance. Son état ne s'améliore pas. Pire, il se dégrade.

C'est en tapant les symptômes de sa fille sur internet, que sa maman découvre l'association «Lyme sans frontières».


«Il y a deux ans, j'ai rencontré un adhérent poursuit Pauline.

Nous avons parlé de nos problèmes. Il m'a conseillé de consulter un spécialiste des maladies infectieuses. Maintenant je suis un traitement homéopathique, sans gluten ni viande rouge.

C'est très strict, car dès que je fais un écart, je le regrette. Mais depuis je vois la vie autrement, et je positive».

En compagnie de ses trois amies Laurie Brion, Laure Gaujarengues et Solen Reus, elle a présenté devant 300 élèves littéralement «scotchés», un diaporama qu'elles ont ensemble réalisé : «Nous aimerions que les gens prennent conscience de cette maladie, que l'on cache presque en France, disent-elles.

Elle est reconnue et soignée aux USA, en Allemagne, mais ici, une grosse ignorance médicale persiste, et tous les médicaments ne sont pas remboursés.

Nous avons envie de nous investir dans le combat de Pauline et de cette association.

Pour elle, mais aussi pour tous les malades». Le témoignage de Catherine Catherine L. de Capdenac-Gare souffre de la même maladie depuis plus de 20 ans.

«Mais il est difficile de dire qu'on est atteint de la maladie de Lyme, dans la mesure où les tests qui se pratiquent en France à l'heure actuelle ne sont pas fiables, dit-elle. En effet pour moi, les deux (test Élisa et test Western blott) se sont révélés négatifs.

C'est grâce à la perspicacité de mon médecin, que la maladie a pu être diagnostiquée. Mais je n'ai aucun papier officiel.

De plus, je n'ai même plus le souvenir d'avoir été piquée par une tique. Les atteintes principales sont d'ordre neurologique, articulaire et cardiaque.

Mais le fait que cette maladie soit volontairement ignorée en France, et donc que les médicaments ne soient pas pris en charge, est un véritable déni».

Adhérente également à Lyme sans frontières, elle suit actuellement un traitement de médecine naturelle, où viande rouge, gluten et produits laitiers sont proscrits.

«C'est vraiment grâce au réseau associatif que j'ai pu savoir ce dont je souffrais, insiste-t-elle. Il est vrai qu'en France, seuls deux médecins hospitalisent pour cette maladie, les docteurs Christian Perronne à Garches et Raouf Ghozzi à Lannemezan».

Association Lyme sans frontières, 1a place des orphelins, 67 000 Strasbourg. contact@associationlymesansfrontieres.com La Dépêche du Midi

Publié le 13/02/2017

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12 février 2017 7 12 /02 /février /2017 19:14

Ouvrir le PDF :

http://www.edimark.fr/Front/frontpost/getfiles/19339.pdf

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12 février 2017 7 12 /02 /février /2017 08:32

Lyme, fièvre du Nil, Ebola : comment l’érosion de la biodiversité favorise virus et bactéries

La biodiversité connaît aujourd’hui l’une de ses plus importantes altérations : les taux actuels d’extinction des espèces animales sont de 100 à 1 000 fois supérieurs à ceux enregistrés à partir des données fossiles.

Ils concernent tous les types d’espèces – oiseaux, reptiles, mammifères.

Le rôle primordial des activités humaines dans ce phénomène est de plus en plus étayé, à tel point que certains scientifiques considèrent que nous entrons aujourd’hui dans une nouvelle ère géologique, l’« anthropocène ».

Si cette altération majeure est généralement étudiée sous l’angle de ses impacts écologiques, elle intéresse également le domaine de la santé, en particulier les maladies infectieuses causées par des agents pathogènes (en particulier les virus et les bactéries).

Près de 75 % de ces maladies infectieuses émergentes chez l’homme sont en effet partagés avec des espèces animales sauvages, comme les oiseaux pour le virus de la fièvre du Nil occidental ou les rongeurs pour la maladie de Lyme, une zoonose causée par la bactérie Borrelia burgdorferi.

Nombre de ces agents infectieux, dits « zoonotiques », utilisent de multiples espèces pour leur transmission.

Or les bouleversements observés au niveau de la diversité biologique peuvent perturber ce cycle naturel de transmission et avoir de multiples conséquences sur la probabilité de leur émergence et/ou de leur niveau de transmission.

Biodiversité et « effet de dilution » La biodiversité fournit de nombreux services aux écosystèmes, en contraignant notamment la transmission de certaines maladies infectieuses.

C’est le cas de celles propagées par une espèce « vecteur », qui sont des insectes hématophages comme les moustiques ou les tiques qui se nourrissent du sang des individus.

Dans le cas où ces « repas de sang » se produisent sur un individu infecté – et appartenant à une espèce animale dite « compétente » dans la transmission du pathogène –, le vecteur se trouvera à son tour infecté.

Lorsqu’il se nourrira à nouveau, il pourra alors transmettre le pathogène.

Ces individus vecteurs pourront de la sorte contaminer des populations humaines, en faisant office de « pont » depuis d’autres espèces animales.

Toutes les espèces ne sont toutefois pas identiquement « compétentes » à transmettre l’agent pathogène : nombre d’entre elles peuvent ainsi être contaminées, mais sans pouvoir transmettre l’agent pathogène.

Or ces espèces, appelées « cul de sac », sont d’autant plus présentes que l’écosystème dans lequel elles évoluent est riche d’une grande biodiversité. La présence de nombreuses espèces aura donc pour effet de « diluer » la transmission de l’agent pathogène.

C’est ce que l’on appelle « l’effet de dilution ».

Dans un contexte de biodiversité altérée comme aujourd’hui, on a toutes les raisons de penser que ces espèces « cul de sac » disparaîtront les premières, étant généralement moins abondantes et donc plus vulnérables aux extinctions.

Une perte de biodiversité pourra donc entraîner une augmentation de la transmission des pathogènes, les espèces vecteurs piquant dès lors majoritairement des animaux plus compétents à transmettre les maladies.

Cet effet de dilution s’observe concrètement, on pense ici au virus de la fièvre du Nil occidental ou à celui de la maladie de Lyme aux États-Unis.

Dans ces deux cas, une diminution du nombre de personnes humaines infectées a été observée dans les zones où la biodiversité s’avère la plus dense.

Le recours à l’effet de dilution sert également à agir sur certaines maladies affectant les plantes : en Chine, le développement de cultures mêlant différentes types de riz a permis de lutter contre la propagation de la rouille du riz qui ravageaient les variétés les plus économiquement intéressantes.

Un consensus scientifique encore fragile

Il faut ici souligner que cet effet de dilution fait toujours débat au sein de la communauté scientifique.

La principale critique réside dans le fait que les espèces qui s’effacent en premier ne sont pas toujours les espèces « cul de sac ».

Prédire quelles espèces disparaissent en premier est particulièrement complexe ; l’effet de dilution ne peut donc être érigé en règle générale.

Une récente étude, comparant un grand nombre de données écologiques et épidémiologiques récoltées au cours des dernières décennies, souligne néanmoins qu’un tel effet se rencontre dans plus de 70 % des cas étudiés.

Un autre aspect, encore peu étudié, doit également être pris en compte : à savoir que, plus il y a d’espèces animales, plus il y a d’agents pathogènes.

Par conséquent, la plupart des pathogènes devraient moins se transmettre, mais il y en aura également plus. Il a toutefois été montré sur des plantes en Allemagne que le nombre total d’infections (toutes espèces de pathogènes considérées) diminue avec le nombre d’espèces, suggérant que l’effet de dilution créé par la richesse des hôtes compense le nombre de nouveaux pathogènes présents.

Il est particulièrement intéressant de se pencher aujourd’hui sur les effets sanitaires positifs de certaines mesures de protection de la biodiversité.

Car si les bienfaits de la biodiversité demeurent souvent saisissables pour les décideurs publics, l’émergence de nouvelles épidémies – on pense aux virus du Chikungunya, Zika ou Ebola – ne manque pas d’interroger.

L’état actuel des connaissances scientifiques nous indique que la disparition de certaines espèces animales peut entraîner une hausse de la transmission de ces maladies et leur diffusion à grande échelle.

Alors que les liens apparaissent de plus en plus imbriqués entre biodiversité et santé humaine, la gestion raisonnée de nos ressources s’avère plus que jamais essentielle.

18 février 2016, 06:44 CET •Mis à jour le 23 décembre 2016, 10:52 CET Benjamin Roche Dans la « galerie de la biodiversité » de l’American Museum of Natural History à New York. Dano/Flickr, CC BY

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12 février 2017 7 12 /02 /février /2017 08:16

https://m.youtube.com/watch?v=AvQZzEw_1Zw&feature=share

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9 février 2017 4 09 /02 /février /2017 18:27

La Vérité sur la maladie de Lyme Infections cachées, vies brisées, vers une nouvelle médecine

La maladie de Lyme, cette étrange infection déclenchée par une piqûre de tique, peut provoquer dermatoses, arthrites et jusqu’à des atteintes neurologiques.

Pourquoi les patients sont-ils souvent abandonnés à leur souffrance ? Pourquoi ne traite-t-on pas plus efficacement cette maladie alors que des solutions thérapeutiques existent ?

Le professeur Perronne, médecin et chercheur de renom, le premier à avoir sensibilisé les pouvoirs publics, raconte dans ce livre de manière claire et précise tout ce qu’on sait aujourd’hui de cette maladie et comment la guérir. Il répond également aux multiples interrogations de ceux, de plus en plus nombreux, qui sont concernés par cette affection.

Ce livre nous aide aussi à mieux comprendre et à savoir soigner cet ensemble de maladies mal connues dues à des infections cachées, comme la maladie de Lyme.

La vérité sur l’histoire de la maladie de Lyme et des infections cachées expliquée par le plus grand médecin spécialiste de ces maladies.

Le professeur Christian Perronne est chef de service en infectiologie à l’hôpital universitaire Raymond-Poincaré de Garches, faculté de médecine Paris-Île-de-France-Ouest. Il a été président de plusieurs instances médicales et scientifiques, notamment du Collège des professeurs de maladies infectieuses et tropicales. Il a été vice-président d’un groupe d’experts sur la vaccination à l’Oms.

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8 février 2017 3 08 /02 /février /2017 09:47

Tick Talk Irlande


Bienvenue au Tick Talk Ireland, un groupe de soutien mis en place pour encourager la sensibilisation, la prévention et le traitement de la maladie de Lyme (Borreliosis) en Irlande.


La maladie de Lyme est actuellement l'infection à transmission vectorielle la plus rapide du monde (propagée par les tiques).

 

En tant que premier groupe de soutien de la maladie de Lyme en Irlande, nous espérons sensibiliser et encourager le diagnostic rapide et le traitement de cette maladie débilitante.


Les symptômes de Lyme peuvent varier selon le stade de la maladie et peuvent varier de léger à sévère, selon le système immunitaire de la victime, le stress, la durée de l'infection ainsi que le niveau de co-infections dans le corps comme la bartonellose, l’Anaplasmose et la babésiose.

 

Certaines personnes peuvent avoir une maladie de Lyme asymptomatique sans symptômes, mais les symptômes peuvent apparaître des mois ou des années après l'infection initiale.
Note importante:

 

Ce site est destiné à des fins d'information seulement et ne doit pas être substitué à un avis médical par un médecin praticien.

 

http://www.ticktalkireland.org/

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7 février 2017 2 07 /02 /février /2017 07:51

 

http://phoenixrising.me/archives/28249

Lipkin’s Monster ME/CFS Study:

Microbes, Immunity & Big Data

The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work. Dr. Ian Lipkin Dr. Ian Lipkin Columbia University’s Center for Infection and Immunity(CII) has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work. ME/CFS is an urgent challenge in clinical medicine and public health.

There is no diagnostic test or specific treatment for ME/CFS, and in the United States alone there are a minimum of 836,000 afflicted individuals. Social and other costs for patients and their families are phenomenal, with medical care costing $24 billion – just in the US. While the US domestic cost is high, ME/CFS is very much a global problem.

The current project at the CII at Columbia University in New York is called ‘Microbial Discovery and Immunity in ME/CFS’. It builds on the foundation they established during the National Institutes of Health’s (NIH) multicenter study of XMRV/pMLV viruses in ME/CFS, led by Dr. Lipkin.

Since that first study the team has published very significant research showing the immune system of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer.

That immune signature work was partially supported by the Chronic Fatigue Initiative, who have also funded CII studies into pathogen discovery, metabolomics, proteomics, epigenetic analysis and immune profiling.

There has been a wealth of investigation in process at CII – not to mention their other collaborative work in progress.

Dr Mady Hornig Dr. Mady Hornig The CII has pioneered many relevant research techniques, has a stellar track record in research as well as unique expertise.

The laboratory team has extensive experience in infectious disease epidemiology, microbe discovery and de-discovery, as well as in the development of sensitive blood tests and animal models needed to test for causal relationships and investigate disease causing mechanisms. Pathogens are not the only string in CII’s bow, their work also encompasses the immune system and neuro-immune areas.

It is hard to exaggerate how much rigor and expertise CII brings to the field of science in ME/CFS. They carefully investigate and go where the leads take them. With all this early investigative work under their belt – this new monster study is suggestive that the CII has good leads they are following.

The Microbe Discovery Project team is ecstatic to bring you more details! Comprehensive deep diving 12278-v1-490xThe study intends to test the hypothesis that ME/CFS cases and controls have different bacterial, fungal or viral microflora in the oropharynx (mouth and throat regions), lower gastrointestinal tract (gut) and blood in a massive, well-powered study.

By rigorously characterizing cases and controls and using state-of-the-art methods for identifying microbes, even currently-unknown ones, the CII will also study patients and controls for evidence of differences in immune system function and metabolic function.

This will be the first ME/CFS study to look at the microbiome over time.

They are collecting stool and saliva at four different times over the course of a year, allowing the researchers to see if the changes in microbiome and immune system are related to changes in symptoms over time. Blood is also collected at the first and last time points.

All ME/CFS cases have been carefully diagnosed and meet both Fukuda criteria and the stricter Canadian criteria.

The study will have 125 ME/CFS patients and 125 healthy matched controls. Patients come from five expert centers for ME/CFS research and treatment across the United States. These include Dr. Lucinda Bateman, Bateman Horne Center, Salt Lake City; Dr. Nancy Klimas, Institute for Neuro Immune Medicine, Nova Southeastern University, Miami; Dr. Susan Levine, Private Practice, New York; Dr. Jose Montoya, Infectious Disease Clinic, Stanford and Dr. Daniel Peterson, Sierra Internal Medicine, Incline Village.

The team has now recruited all the patients and controls they need, and enrollment is closed. The CII only have the funding to rigorously collect, organize and store samples. They have NO funding to test and analyze the samples – which will generate a colossal amount of data from a large and carefully diagnosed, representative group of patients.

If they get the funding they intend to do any or all of the following testing and analysis. Microbiome tumblr_lnrquuLN9b1qktcopFirst off, the CII plans to investigate the human microbiome as it relates to ME/CFS, to determine how bacteria, fungi, viruses – and the immune response to them – contribute to the disease.

They will use high-tech methods to identify and quantify all the different bacteria (bacteriome), fungi (mycobiome) and viruses (virome) in each person’s gut and mouth/throat microbiome, effectively creating a map of each person’s microbiome.

This alone is a huge undertaking in order to identify potential triggers of immune response and or metabolic problems.

The team then intends to apply a series of even more new technologies to test the blood for proteins, metabolites and immune markers to tease out what’s going wrong in people with ME/CFS. Pathogen hunt VirCapSeq-VERT, is the Virome-Capture-Sequencing platform for Vertebrate viruses.

This is powerful new technology invented by CII and hailed by Scientific American as one of the “world changing ideas” of 2015. It is a system to broadly screen for all viral infections in vertebrates including humans.

This test has much greater sensitivity than the current standard molecular techniques, and increases viral matches from 100 to 10,000-fold compared with conventional high-throughput tests. This testing identifies any virus that has ever been found to be in a person – 1.7 million agents are reported to be tapped through this testing. This work would clearly increase the yield of viruses detected in people with ME/CFS. Proteomics canstockphoto21448419 Visualisations help researchers understand with complex data Proteomics, is the large-scale study of proteins in the blood, which gives researchers a protein ‘signature ’.

By looking at all the proteins in the blood, rather than just focusing on a few, researchers get a much fuller picture of what’s going on, or wrong, in the body. The aim is to identify biomarkers in blood that can be used for diagnosis, to predict illness progression and track responses to interventions. Biomarkers may also help identify targets for new therapies. Metabolomics Metabolomics, in a similar way to proteomics, is the study of ‘metabolites’, all the small chemicals in any tissue or the blood such as amino acids or hormones that result from metabolic processes in cells.

This yields clues about what’s gone wrong in the body. Increasingly researchers are turning to the new field of metabolomics to understand disease. Ron Davis recently reported fascinating preliminary metabolomics findings in ME/CFS that suggest something is going seriously wrong with how patients produce energy from food. As with proteomics, metabolomics may be used to identify potential ‘biomarkers’ that can be used for diagnosis and therapeutic targets. For instance, if the work identifies specific problems in energy metabolism, researchers can aim to tackle these problems with drugs, or even with supplements. Immunology To identify biomarkers for diagnosis, prognosis, as well as potential therapeutic targets, and to determine the history of exposure to infectious agents that may trigger onset or exacerbation of ME/CFS.

Genetics/Epigenetics The team will look to see if particular versions of genes are associated with subgroups that may predict course of illness or response to different treatments. Epigenetics is the main system that turns some genes on and some genes off long-term, without affecting the DNA sequence itself.

This study will look for epigenetic signatures that may be associated with ME/CFS and that may correlate with infectious or other triggers.

Digging-deeper-medicine Homing in on ME/CFS This study represents a comprehensive, robust investigation of the priority areas of research for ME/CFS that Dr. Lipkin recently identified in his letter to the NIH.

This work now includes complex data mining and more. This can only be described as a tour de force that will home in on molecular detail – dive deeper, solidify findings and parse out subgroups. This is just the type of study that will help lead to diagnostic tools and possible treatment therapies.

There is some important key study strengths that are worth noting: The study is a good size, big enough to robustly detect even modest differences between patients and controls, and to tease out subgroups. Each of the four samples taken from every patient is limited to a three-month seasonal time frame to take into account natural, seasonal variations in bacterial, fungal, viral communities and immune system function.

Patients come from strategic geographic distribution of sites across the United States. They will also collect data throughout the study on any new diagnoses or medications. A big effort has been undertaken to recruit a diverse population of patients and controls so that they will be more representative of the whole patient population.

This means that any conclusions should apply to most patients, rather than being specific to a particular type of patient recruited for a particular study. Clinics will also indicate whether or not patients have cognitive problems (eg. memory or concentration) to help see if this identifies a clear subgroup.

Dr. Lipkin also explained in the letter to the NIH that their aim is to develop a Clinical Trials Unit to: rigorously examine interventions, including probiotic/nutritional, biological (e.g., immune regulators; anti-cytokine antibodies), medication and potentially, microbiome-related (e.g., fecal microbiome transplantation, other) approaches.

As the team already has close links with five expert clinics, the trials unit is well placed to recruit patients to get trials moving as fast as possible. This study would be part of the building block foundation for the establishment of a center of excellence in ME/CFS research, that will hopefully ultimately have a global component.

The Crunch

The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.

Dr. Ian Lipkin Dr. Ian Lipkin Columbia University’s Center for Infection and Immunity(CII) has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work. ME/CFS is an urgent challenge in clinical medicine and public health.

There is no diagnostic test or specific treatment for ME/CFS, and in the United States alone there are a minimum of 836,000 afflicted individuals. Social and other costs for patients and their families are phenomenal, with medical care costing $24 billion – just in the US. While the US domestic cost is high, ME/CFS is very much a global problem.

The current project at the CII at Columbia University in New York is called ‘Microbial Discovery and Immunity in ME/CFS’. It builds on the foundation they established during the National Institutes of Health’s (NIH) multicenter study of XMRV/pMLV viruses in ME/CFS, led by Dr. Lipkin.

Since that first study the team has published very significant research showing the immune system of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer.

That immune signature work was partially supported by the Chronic Fatigue Initiative, who have also funded CII studies into pathogen discovery, metabolomics, proteomics, epigenetic analysis and immune profiling.

There has been a wealth of investigation in process at CII – not to mention their other collaborative work in progress. Dr Mady Hornig Dr. Mady Hornig The CII has pioneered many relevant research techniques, has a stellar track record in research as well as unique expertise.

The laboratory team has extensive experience in infectious disease epidemiology, microbe discovery and de-discovery, as well as in the development of sensitive blood tests and animal models needed to test for causal relationships and investigate disease causing mechanisms. Pathogens are not the only string in CII’s bow, their work also encompasses the immune system and neuro-immune areas. It is hard to exaggerate how much rigor and expertise CII brings to the field of science in ME/CFS.

They carefully investigate and go where the leads take them. With all this early investigative work under their belt – this new monster study is suggestive that the CII has good leads they are following.

The Microbe Discovery Project team is ecstatic to bring you more details! Comprehensive deep diving 12278-v1-490xThe study intends to test the hypothesis that ME/CFS cases and controls have different bacterial, fungal or viral microflora in the oropharynx (mouth and throat regions), lower gastrointestinal tract (gut) and blood in a massive, well-powered study. By rigorously characterizing cases and controls and using state-of-the-art methods for identifying microbes, even currently-unknown ones, the CII will also study patients and controls for evidence of differences in immune system function and metabolic function.

This will be the first ME/CFS study to look at the microbiome over time. They are collecting stool and saliva at four different times over the course of a year, allowing the researchers to see if the changes in microbiome and immune system are related to changes in symptoms over time. Blood is also collected at the first and last time points. All ME/CFS cases have been carefully diagnosed and meet both Fukuda criteria and the stricter Canadian criteria.

The study will have 125 ME/CFS patients and 125 healthy matched controls. Patients come from five expert centers for ME/CFS research and treatment across the United States. These include Dr. Lucinda Bateman, Bateman Horne Center, Salt Lake City; Dr. Nancy Klimas, Institute for Neuro Immune Medicine, Nova Southeastern University, Miami; Dr. Susan Levine, Private Practice, New York; Dr. Jose Montoya, Infectious Disease Clinic, Stanford and Dr. Daniel Peterson, Sierra Internal Medicine, Incline Village.

The team has now recruited all the patients and controls they need, and enrollment is closed.

The CII only have the funding to rigorously collect, organize and store samples. They have NO funding to test and analyze the samples – which will generate a colossal amount of data from a large and carefully diagnosed, representative group of patients. If they get the funding they intend to do any or all of the following testing and analysis.

Microbiome tumblr_lnrquuLN9b1qktcopFirst off, the CII plans to investigate the human microbiome as it relates to ME/CFS, to determine how bacteria, fungi, viruses – and the immune response to them – contribute to the disease.

They will use high-tech methods to identify and quantify all the different bacteria (bacteriome), fungi (mycobiome) and viruses (virome) in each person’s gut and mouth/throat microbiome, effectively creating a map of each person’s microbiome.

This alone is a huge undertaking in order to identify potential triggers of immune response and or metabolic problems.

The team then intends to apply a series of even more new technologies to test the blood for proteins, metabolites and immune markers to tease out what’s going wrong in people with ME/CFS. Pathogen hunt VirCapSeq-VERT, is the Virome-Capture-Sequencing platform for Vertebrate viruses. This is powerful new technology invented by CII and hailed by Scientific American as one of the “world changing ideas” of 2015.

It is a system to broadly screen for all viral infections in vertebrates including humans.

This test has much greater sensitivity than the current standard molecular techniques, and increases viral matches from 100 to 10,000-fold compared with conventional high-throughput tests. This testing identifies any virus that has ever been found to be in a person – 1.7 million agents are reported to be tapped through this testing.

This work would clearly increase the yield of viruses detected in people with ME/CFS. Proteomics canstockphoto21448419 Visualisations help researchers understand with complex data Proteomics, is the large-scale study of proteins in the blood, which gives researchers a protein ‘signature ’.

By looking at all the proteins in the blood, rather than just focusing on a few, researchers get a much fuller picture of what’s going on, or wrong, in the body.

The aim is to identify biomarkers in blood that can be used for diagnosis, to predict illness progression and track responses to interventions. Biomarkers may also help identify targets for new therapies. Metabolomics Metabolomics, in a similar way to proteomics, is the study of ‘metabolites’, all the small chemicals in any tissue or the blood such as amino acids or hormones that result from metabolic processes in cells.

This yields clues about what’s gone wrong in the body. Increasingly researchers are turning to the new field of metabolomics to understand disease. Ron Davis recently reported fascinating preliminary metabolomics findings in ME/CFS that suggest something is going seriously wrong with how patients produce energy from food.

As with proteomics, metabolomics may be used to identify potential ‘biomarkers’ that can be used for diagnosis and therapeutic targets. For instance, if the work identifies specific problems in energy metabolism, researchers can aim to tackle these problems with drugs, or even with supplements.

Immunology To identify biomarkers for diagnosis, prognosis, as well as potential therapeutic targets, and to determine the history of exposure to infectious agents that may trigger onset or exacerbation of ME/CFS.

Genetics/Epigenetics

The team will look to see if particular versions of genes are associated with subgroups that may predict course of illness or response to different treatments.

Epigenetics is the main system that turns some genes on and some genes off long-term, without affecting the DNA sequence itself. This study will look for epigenetic signatures that may be associated with ME/CFS and that may correlate with infectious or other triggers.

Digging-deeper-medicine Homing in on ME/CFS This study represents a comprehensive, robust investigation of the priority areas of research for ME/CFS that Dr. Lipkin recently identified in his letter to the NIH. This work now includes complex data mining and more.

This can only be described as a tour de force that will home in on molecular detail – dive deeper, solidify findings and parse out subgroups.

This is just the type of study that will help lead to diagnostic tools and possible treatment therapies.

There is some important key study strengths that are worth noting: The study is a good size, big enough to robustly detect even modest differences between patients and controls, and to tease out subgroups.

Each of the four samples taken from every patient is limited to a three-month seasonal time frame to take into account natural, seasonal variations in bacterial, fungal, viral communities and immune system function.

Patients come from strategic geographic distribution of sites across the United States.

They will also collect data throughout the study on any new diagnoses or medications.

A big effort has been undertaken to recruit a diverse population of patients and controls so that they will be more representative of the whole patient population.

This means that any conclusions should apply to most patients, rather than being specific to a particular type of patient recruited for a particular study.

Clinics will also indicate whether or not patients have cognitive problems (eg. memory or concentration) to help see if this identifies a clear subgroup. Dr. Lipkin also explained in the letter to the NIH that their aim is to develop a Clinical Trials Unit to: rigorously examine interventions, including probiotic/nutritional, biological (e.g., immune regulators; anti-cytokine antibodies), medication and potentially, microbiome-related (e.g., fecal microbiome transplantation, other) approaches.

As the team already has close links with five expert clinics, the trials unit is well placed to recruit patients to get trials moving as fast as possible.

This study would be part of the building block foundation for the establishment of a center of excellence in ME/CFS research, that will hopefully ultimately have a global component.

The Crunch money There are no two ways about it – this study needs funding. More than a quarter of samples and questionnaires have already been collected and this analyses needs to get moving.

They could be testing and analyzing these right now if the funds were available. The cost is often a lot more for analysis than collection, especially with this type of testing. The CII team is actively seeking funds to complete the work.

Our patient-led Microbe Discovery Project with all the support from the ME/CFS global community has helped to raise over $1.5 million in funds for CII research – our community made that happen.

These funds along with an NIH NINDS grant and heavy subsidization by CII, enabling this collection. CII needs at least $5 Million to test and analyze the samples So far, the NIH has only given the researchers enough to partly cover recruiting patients and collecting samples, but the study is stranded without the funds for the all-important tests and analysis.

We sincerely hope the NIH will decide to help make up some of the shortfall, but can we afford to wait?

Too many people are too sick.

Too many people have no support, help or treatments.

There is a huge and urgent need for high quality research, and the CII team really needs our community’s help – so that they can help patients.

We are still in a position of needing to bail-out mainstream research. If you have ME/CFS, donating to great research is like an investment in better treatments. Think of the vast collective amount spent by patients on doctor’s appointments, think of all the trial medications and supplements that haven’t worked – ending up in the bin. If we spent the equivalent of one doctor’s visit or the cost of a supplement on investing in research – we can help get this study funded! Every donation counts and every share counts!

Please help Thousands of donations are needed: you can give on CII’s secure site. Spreading the word with our blogs on Facebook or other social media helps to gain more donations, and can also lead to large donations.

If you would like some more background information, take a look at the the Microbe Discovery Project’s resources page. You can also subscribe to our blog, so you won’t miss out on important news. Thank you so much for your support! This is blog is taken from The Microbe Discovery Project website.

A shorter version was published at #MEAction. Support Phoenix Rising Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

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Published by Jean-Pierre LABLANCHY - CHRONIMED - dans Infections froides
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