Lähettäjä: Soijuv Lähetetty: 6.2.2006 9:06
Vuonna 2003 perustettiin kansainvälinen "Online" edunvalvontajärjestö ajamaan neurologisista sairauksista kärsivien asioita. Perustajajäsenten (Jane Bryant ja Angela Kennedy) lapset sairastuivat virheellisen diagnoosin mukaan krooniseen fatiikkiin. Vasta vuosien kärsimyksien jälkeen lapsille saatiin oikea diagnoosi - oireiden havaittiin johtuvan borreliabakteerista! Tauti on tietysti ehtinyt tänä aikana kroonistua. Nyt järjestö ajaa myös borrelioosiin sairastuneiden asioita.
The One Click international pressure group founded in 2003 by Jane Bryant and Angela Kennedy was originally set up to assist sufferers of the neurological disease ME/CFS, classified as such by the World Health Organisation under ICD-10 G93.3, because our children had been diagnosed with this illness.
It has now been found that our children have borrelia spirochaetes - chronic Borreliosis.
For information on the chronic Borreliosis issue, see here:
Lyme disease: ancient engine of an unrecognised borreliosis pandemic
NHS National Library for Health - Diagnosing Lyme disease
Our children were originally misdiagnosed and have suffered greatly and needlessly for years. If our children had been properly diagnosed and treated appropriately at the beginning of their illness, things would have been very different for them and for us. Borreliosis is treatable. However, if the infection is allowed to proliferate unchecked and untreated for many years as is the case with our children, the treatment road is hard. The symptoms of chronic Borreliosis and ME/CFS are to all intents and purposes, the same.
The fact that our children have chronic Borreliosis means that they are excluded from being labelled and diagnosed as ME/CFS sufferers by the exclusion clauses of all the ME/CFS criteria currently in use, including the Oxford, Fukuda/CDC and Canadian criteria that prevent an ME/CFS diagnosis if a chronic infection is present.
Any sensible reader will know that the situation is far more complex than this and we will therefore continue, where appropriate, to advocate for all groups of people with organic disease adversely affected by the psychiatric paradigm conducted by psychiatrist Simon Wessely et al.
We would recommend that anybody interested in the issue of Borreliosis should visit the EuroLyme group at http://health.groups.yahoo.com/group/EuroLyme/.
In light of this new chronic Borreliosis diagnosis in relation to our children, the One Click international pressure group will now widen its remit and will provide opposition to the psychiatric paradigm for patients suffering from diseases such as Gulf War Syndrome, Lyme disease/Borreliosis and ME/CFS. We will continue to carry breaking news, information and archive resources on these issues.
Jane Bryant & Angela Kennedy
The One Click Group
KROONINEN FATIIKKI BORRELIOOSIN AIHEUTTAMA
Valvojat: Jatta1001, Borrelioosiyhdistys, Bb
KROONINEN FATIIKKI BORRELIOOSIN AIHEUTTAMA
Viimeksi muokannut Bb, La Maalis 07, 2009 15:03. Yhteensä muokattu 1 kertaa.
Lähettäjä: Soijuv Lähetetty: 6.2.2006 9:07
Järjestö löytyy tästä osoitteesta:
http://www.theoneclickgroup.co.uk/
Järjestö löytyy tästä osoitteesta:
http://www.theoneclickgroup.co.uk/
Lähettäjä: Soijuv Lähetetty: 10.2.2006 8:48
Brittiläisten lasten tapaus on saanut julkisuutta nyt laajemminkin. Artikkelin mukaan kaikki britit tuntevat kroonisen uupumisoireyhtymän. Se on tällä hetkellä suurin syy lasten ja nuorten poissaoloon koulusta. Mikäli lapsi sairastuu kyseisiin oireisiin ja on paljon poissa koulusta, sosiaaliviranomaiset tekevät kotikäynnin asian selvittämiseksi!
Selvityksen mukaan suurin osa lääkäreistä ei tunnusta kroonista uupumusta sairaudeksi. Nekin, jotka sen tunnustavat, pitävät oireita psyykkisinä. Tämä siitäkin huolimatta, että WHO:n luokituksessa oire katsotaan neurologiseksi sairaudeksi.
Sadat brittiläiset kyselevät nyt miten he saavat omaisensa testattua borrelioosin varalta ja mistä ylipäätään löytäisi lääkärin joka on edes kuullut borrelioosista. Onko tässä kyseessä vuosisadan rikos? Onko yli 200 000 brittiläistä saanut roskapönttödiagnoosin, kun heidän väitetään sairastavan kroonista uupumisoireyhtymää vaikka syy on toisaalla?
Two UK Mothers Shocked by Lyme Diagnosis for their ME Kids.
http://lymeblog.com/modules.php?name=Ne ... le&sid=389
LymeBlog News
Lexington, KY USA
By Denise Longman, Special to LymeBlog News
February 8, 2006 7:07 PM EST
In the UK everyone has heard of ME, or Chronic Fatigue Syndrome (CFS). Sometimes its called Post-Viral Fatigue Syndrome (PVFS).
Whatever the name, it is now the biggest cause of long-term absence from school or college. And if your kids have ME/CFS, there´s a 1 in 7 chance of your family being investigated by the Social Services.
How on earth has this come about in today´s modern 21st century scientific world?
For a start, a recent (2005) poll of General Practitioners in one area of the UK showed that over 50% of them did not recognise ME/CFS as a disease at all. Even those who did concede that it exists were inclined to think of it as having a psychological basis. This is in spite of the World Health Organisations continuing classification of ME as a neurological disease.
Somehow, psychiatric theories of "unexplained" illness have taken hold of British and US medicine, leading to under-investigation of patients and the allocation of most research funds to the psychiatric schools. The general public has followed the media in their acceptance of this bias, which has no actual basis in evidence-based research.
Jane Bryant and Angela Kennedy are 2 British women who have experienced the devastation of their childrens lives by ME. They have been running the most out-spoken and active ME/CFS pressure group for some years, and their names are well-known in the ME community here in Britain and in many other countries across the world
This Monday, 6th February, the news on the front page of their website stunned all of this global community.
(See http://theoneclickgroup.co.uk )
The women themselves are shocked: this was a situation that they never thought would apply to them. Now they openly admit that their minds had been closed to the possibility that ME/CFS could be Lyme. They feel anguish that should not be theirs to bear.
Should they have been more aware of the increasing suspicion that hundreds of thousands of UK ME/CFS victims could actually have Lyme.? Could they have had their children tested much sooner than this, and thus have lessened their kids' chances of having permanent damage from this awful disease?
Friends have tried to reassure them that must not blame themselves - they too are mothers with ME/CFS kids, or partners or family members, who have also never been tested.
Hundreds of people in the UK are at this minute asking themselves "How can we get our loved ones tested?. Where is there a doctor who has even heard of Lyme disease?"
Is this the crime of the century? A quarter of a million people in the UK with a dustbin diagnosis? What has happened to our National Health Service?
Brittiläisten lasten tapaus on saanut julkisuutta nyt laajemminkin. Artikkelin mukaan kaikki britit tuntevat kroonisen uupumisoireyhtymän. Se on tällä hetkellä suurin syy lasten ja nuorten poissaoloon koulusta. Mikäli lapsi sairastuu kyseisiin oireisiin ja on paljon poissa koulusta, sosiaaliviranomaiset tekevät kotikäynnin asian selvittämiseksi!
Selvityksen mukaan suurin osa lääkäreistä ei tunnusta kroonista uupumusta sairaudeksi. Nekin, jotka sen tunnustavat, pitävät oireita psyykkisinä. Tämä siitäkin huolimatta, että WHO:n luokituksessa oire katsotaan neurologiseksi sairaudeksi.
Sadat brittiläiset kyselevät nyt miten he saavat omaisensa testattua borrelioosin varalta ja mistä ylipäätään löytäisi lääkärin joka on edes kuullut borrelioosista. Onko tässä kyseessä vuosisadan rikos? Onko yli 200 000 brittiläistä saanut roskapönttödiagnoosin, kun heidän väitetään sairastavan kroonista uupumisoireyhtymää vaikka syy on toisaalla?
Two UK Mothers Shocked by Lyme Diagnosis for their ME Kids.
http://lymeblog.com/modules.php?name=Ne ... le&sid=389
LymeBlog News
Lexington, KY USA
By Denise Longman, Special to LymeBlog News
February 8, 2006 7:07 PM EST
In the UK everyone has heard of ME, or Chronic Fatigue Syndrome (CFS). Sometimes its called Post-Viral Fatigue Syndrome (PVFS).
Whatever the name, it is now the biggest cause of long-term absence from school or college. And if your kids have ME/CFS, there´s a 1 in 7 chance of your family being investigated by the Social Services.
How on earth has this come about in today´s modern 21st century scientific world?
For a start, a recent (2005) poll of General Practitioners in one area of the UK showed that over 50% of them did not recognise ME/CFS as a disease at all. Even those who did concede that it exists were inclined to think of it as having a psychological basis. This is in spite of the World Health Organisations continuing classification of ME as a neurological disease.
Somehow, psychiatric theories of "unexplained" illness have taken hold of British and US medicine, leading to under-investigation of patients and the allocation of most research funds to the psychiatric schools. The general public has followed the media in their acceptance of this bias, which has no actual basis in evidence-based research.
Jane Bryant and Angela Kennedy are 2 British women who have experienced the devastation of their childrens lives by ME. They have been running the most out-spoken and active ME/CFS pressure group for some years, and their names are well-known in the ME community here in Britain and in many other countries across the world
This Monday, 6th February, the news on the front page of their website stunned all of this global community.
(See http://theoneclickgroup.co.uk )
The women themselves are shocked: this was a situation that they never thought would apply to them. Now they openly admit that their minds had been closed to the possibility that ME/CFS could be Lyme. They feel anguish that should not be theirs to bear.
Should they have been more aware of the increasing suspicion that hundreds of thousands of UK ME/CFS victims could actually have Lyme.? Could they have had their children tested much sooner than this, and thus have lessened their kids' chances of having permanent damage from this awful disease?
Friends have tried to reassure them that must not blame themselves - they too are mothers with ME/CFS kids, or partners or family members, who have also never been tested.
Hundreds of people in the UK are at this minute asking themselves "How can we get our loved ones tested?. Where is there a doctor who has even heard of Lyme disease?"
Is this the crime of the century? A quarter of a million people in the UK with a dustbin diagnosis? What has happened to our National Health Service?