ANNOUNCEMENT: BC MINISTRY OF HEALTH NEWS RELEASE
by Lydia Neilson
NEWS RELEASE
Ministry of Health Provincial Health Services Authority
March 30, 2011
Help for patients with Lyme Disease, ME/CFS and Fibromyalgia
CANADA – VICTORIA, BC –
Ryan Jabs, Media Relations Manager of the Ministry of Health for British Columbia announced
A $2-million provincial clinical and research study which will help patients with chronic Lyme disease, fibromyalgia, and chronic fatigue syndrome, with screening, diagnosis and treatment.
Mr. Jabs stated that “ over the last few years, there have been many advances in genome science, including DNA sequencing and computer analysis. These advances have led to new techniques that may help to diagnose previously difficult illnesses, such as these. As a result, in September 2010 the Ministry of Health Services asked the Provincial Health Services Authority (PHSA) to present options for a clinic for patients with complex symptoms, possibly related to an underlying infectious disease.”
Mr. Jabs further stated that with this clinic and study, British Columbia “is taking a leading role within Canada” working with patients and family physicians from across the province. Referrals will be accepted from family physicians and other health care providers from patients exhibiting symptoms for these illnesses in an aim is to provide accurate diagnosis and treatment and manage their symptoms.
In addition, the clinic will have telehealth capabilities and provide consultations and information to physicians and health care providers. Researchers will collaborate with the clinic in order to examine these illnesses in dept and plan a protocol. It is anticipated to have the clinic and studies up and running by Fall 2011.
To view more details, visit http://www.gov.bc.ca/connect
.
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 1 month
ANNOUNCEMENT: ATTENTION YOUNG PEOPLE
by Lydia Neilson
ATTENTION YOUNG PEOPLE AROUND THE WORLD
Speak Up About ME invites you to add your voice!
May 12th is ME/CFS Awareness Day. On May 11, 2011 as part of my testimony at The Chronic Fatigue Syndrome Advisory Committee (CFSAC) in Washington, I will speak on behalf of those who became ill with ME/CFS before the age of 22 years.
If you had early onset ME/CFS (no matter where you live), you can participate by giving me your name (real or alias) , age at onset, age at diagnosis, current age and the country you live in.
Please send your information to
HYPERLINK "http://www.speakupaboutme.org/contact-us" http://www.speakupaboutme.org/contact-us or
HYPERLINK "mailto:SpeakUpAboutME%40gmail.com" SpeakUpAboutME(a)gmail.com
Please note that by giving me this information, you are giving me permission to use this information in my CFSAC testimony and at any other time when relevant to ME/CFS.
- Send CFSAC a note (no more than five typed pages in length).
Explain why what happens in the US (in this case, about ME/CFS) matters to people in other countries.
Public comment to be given as printed material to CFSAC members for review, needs to be sent to the Executive Secretary at HYPERLINK "mailto:cfsac@hhs.gov" cfsac(a)hhs.gov, prior to close of business on Monday, April 18, 2011.
Watch the livestream (follow links from here http://www.hhs.gov/advcomcfs/meetings/index.html ) of the proceedings on May 10th and 11th (May 11th is Speak Up About ME). Watch the archives of CFSAC meetings. Encourage others to watch the livestream and view the archives. We have been told that viewing numbers (even of the archives) are taken very seriously. **
* Please note – submissions should be respectful. Constructive suggestions are especially useful. (Antagonism doesn’t move us forward.)
**Also please note – on the afternoon of May 11th, participants (who are able to) will be meeting with congressional officials
“Members of the public not providing public comment at the meeting who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Executive Secretary, at HYPERLINK "mailto:cfsac@hhs.gov" cfsac(a)hhs.gov, prior to close of business on Monday, April 18, 2011. Submissions are limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team upon submission of your materials to HYPERLINK "mailto:cfsac@hhs.gov" cfsac(a)hhs.gov.xn--ivg
HYPERLINK "http://edocket.access.gpo.gov/2011/2011-6702.htm" http://edocket.access.gpo.gov/2011/2011-6702.htm
Thank you,
Denise Lopez-Majano
"Speak Up About ME, Invisible No More!" - Let's Make This HAPPEN!!
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 1 month
ANNOUNCEMENT: URINE TEST CORRECTION
by Lydia Neilson
Dear Friends:
I had received the information about the urine test yesterday as breaking news and took it as such. I recalled hearing about a urine test for CFS awhile back but couldn't remember from whom or where.
One of my contacts went on the internet and found out the article dates back to 2009 when it first was announced. I then went to the Protea Biopharma website and viewed its FAQs in which it states that it is not an approved test but still considered research. However, as patients have been requesting the kit, it is available at a price. Below is what was posted as an explanation.
I am really sorry that I didn't follow my instincts and checked out what I remembered from back then before sending you the information as new.
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
> FYI: I found this on the internet regarding the same article.
>
> http://www.ei-resource.org/news/chronic-fatigue-syndrome-news/diagnostic-...
>
> Added at the bottom note:
>
> CORRECTION: It has been brought to my attention that this story is in fact based on a Press Release circulated in 2009. Sincerest apologies for raising false hopes. The article has been left online for reference purposes but should be seen as historic rather than a new (March 2011) information.
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 1 month
ANNOUNCEMENT: BUV ANNOUNCES TEST FOR ME/CFS
by Lydia Neilson
BELGIUM
Dr. Kenny De Meirleir of the Brussels Free University (VUB) has announced that he has successfully developed a diagnostic test for ME/CFS. The Myalgic Encephalopathy Association Belgium (MEAB) estimates there are between 30,000 to 40,000 people in Belgium with ME/CFS.
Since 2002, the Flemish government has invested over €10 million in five "reference centres" across the region in Leuven, Antwerp, Ghent and Brussels for the diagnosis and treatment for ME/CFS but offer only cognitive behavioural therapy and physical rehabilitation.
"These people have been mistreated for years," Dr De Meirleir says. "CFS was treated as a psychosomatic complaint. But someone who runs 10 metres after a bus and then has to spend a week in bed recovering has a serious medical problem."
The test, manufactured by Protea Biopharma, in which Dr De Meirleir is a partner, detects the presence of hydrogen sulphide (H2S), which is produced in the intestines when bacteria come in contact with heavy metals. People with ME/ CFS have been shown to have higher concentrations of intestinal bacteria than normal, which leads to higher levels of H2S.
H2S is a gas present in minuscule concentrations in normal people but at toxic levels in ME/CFS patients. The reasons for overproduction of bacteria can range from lactose intolerance to viral infection to stress.
According to the draft of a journal article soon to be published by Dr. De Meirleir and his team, H2S causes intolerance to light and noise, a depressed immune system and low white blood cell count. It also leads to retention of mercury by the body, which in turn produces cell death and damage to energy metabolism. The biggest effects, though, are produced on the central nervous system, explaining the main symptoms of ME/CFS.
“There’s still a great deal of work to be done to find a cure” Dr. De Meirleir told Radio 1 listeners "CFS is not an illness, it's a condition," which means that the underlying causes of ME/CFS could vary widely and that each would have to be treated on its own.
Note: Dr. Kenny De Meirleir was one of the panel members of the Canadian ME/CFS Working Case Clinical Definition, Diagnostic & Treatment Protocols, a Consensus Document published in 2003 which can be viewed at http://www.mefmaction.com
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 1 month
NATIONAL ME/FM ACTION NETWORK NEW WEBSITE LAUNCHED
by Lydia Neilson
Hello Everyone:
As of this morning, our new website is now launched and can be viewed at www.mefmaction.com
Hope you like it.
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 1 month
ANNOUNCEMENT: CALL FOR PAPERS UPDATE
by Lydia Neilson
CALL FOR PAPERS
• The Conference Planning Committee of the International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) invites potential presenters to submit abstracts and/or workshop proposals for our next biennial meeting Translating Evidence into Practice.
· NEW DEADLINE FOR CALL FOR PAPERS APRIL 2, 2011
· WORKSHOPS MARCH 15, 2011
· For submission details, Please visit http://www.mecfsme.org
• To be held in Ottawa, Ontario, Canada, September 22-25, 2011. Hosted by the National ME/FM Action Network (Canada)
•
Integrative conference themes will focus on fatigue, pain, sleep, pediatrics, cognition, and brain function in CFS/ME, Fibromyalgia, and Related Illnesses (e.g., cancer fatigue). I
· In addition, different sessions will address advances in assessment and treatment (from biological to behavioral), as well as new developments in virology, immunology, and neuroendocrinology.
· Papers will be reviewed by the Conference Planning Committee for selection as an oral lecture, short oral presentation, or poster presentation. Professional workshop proposals will also be accepted. Attendees to IACFS/ME conferences are primarily biomedical and behavioral professionals, including clinicians, researchers, and educators. Papers should reflect this level of experience and expertise.
· It is anticipated that this event will be accredited for continuing medical education for Category 1 CME (physicians), CNE for nurses, and CPE for pharmacists.
2011 CONFERENCE LOCATION:
• Delta Ottawa City Centre Hotel
Ottawa, Ontario, Canada
ABOUT OTTAWA
IACFS/ME 2011 conference location Delta Ottawa City Centre overlooks the cityscapes and natural wonders of Ottawa, touted as the city by which all capitals should be measured.
The conference will be held during the height of fall foliage season with leaves that change to brilliant oranges, reds and yellows.
Situated in Ottawa's political and business hub.
Delta Ottawa is conveniently located downtown and has easy access to entertainment districts, Parliament Buildings, museums and many other popular attractions. Nestled on the banks of the majestic Ottawa, Rideau and Gatineau Rivers, Ottawa is one of the most beautiful capitals in the world.
A thriving international technology and business centre and world class tourism and convention destination, Ottawa is also rich in culture and heritage with its many national institutions, parklands, waterways and historic architecture.
Whether your interest is culture, history or simply natural outdoor attractions, Canada’s Capital region offers a unique combination of both. 30 museums. 50 galleries and theatres. Night clubs. Fine dining. World-class shopping. Heritage sites. Stunning architecture. Festivals. Cultural activities. Attractions. Tours. Natural wonders. Sports. Friendly people.
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 1 month
AN: WORLD WIDE PATIENT ALLIANCE CALL FOR ACTION
by Lydia Neilson
Dear Friends:
Tina Tidmore, Coordinator of the ME/CFS World Wide Patient Alliance, advises that their January Survey indicated that patients want their doctors to know about ME/CFS and thereby create a new perception of our illness. As a result of that survey, MCWPA has developed simple instructions on how you can participate and spread the word:
Please view: http://forum.mcwpa.org/viewtopic.php?f=61&t=183
To see the MCWPA activity on donations and members:
http://www.causes.com/causes/511536?m=1a1fe378
To see their Public Service Announcement video contest:
http:///forum.mcwpa.org/viewtopic.php?f=8&t=393
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: SURVEY BY PATIENTS ON DOCTORS
by Lydia Neilson
PATIENTS THINK THAT DOCTORS STAND IN THE WAY OF THEIR RECEIVING THE BEST TREATMENT AND CARE
SAYS A GLOBAL SURVEY OF 2,500 PATIENT GROUPS
(INCLUDING ALMOST 2,000 GROUPS FROM WESTERN AND EASTERN EUROPE)
For sample pages of the report go to http://bit.ly/i9GSD6
WEBSITE: http://www.patient-view.com
A 400-page report, What do patients think of doctors?, published in early-March 2011 by UK research organisation PatientView, finds that over half (53%) of the 2,500 respondent patient groups think patients believe doctors are standing in the way of their receipt of the correct diagnosis, treatment and and/or support—and are making patients ‘fight the system’ to obtain the care they need.
The situation is at its worst in five countries—Canada, Germany, Italy, New Zealand and the UK—where 60% or more of patient groups say that health professionals need to improve their relationships with patients by not making patients fight the system for their medical needs. 70% of patient groups representing the interests of patients with gastrointestinal problems, 60% representing the interests of patients with multiple sclerosis, and 60% rare diseases, feel that health professionals need to stop forcing patients to ‘fight the system’ to get the care they need.
Poor doctor-patient relationships have a negative effect on patient health
What do patients think of doctors? focuses on the current state of doctor-patient relationships, and offers numerous insights into how they can be improved. The report finds that less than a third of groups representing patients believe GPs and consultants remain traditional and patriarchal in their attitudes to patients. On the other hand, only 15% believe that doctors treat patients as equals (and act on that belief)—the rest believe that the situation varies from doctor to doctor, or that doctors may intend to take a partnering role, but fail to live up to it. Relationships between doctors and patients are undoubtedly in need of considerable improvement, especially in some of the less well-performing countries [see charts in sample pages at weblink above].
The state of doctor-patient relations has an important bearing on how well patients respond to treatment. In the report, patient groups are quoted as saying that poor doctor-patient relationships prevent patients from coming forward for medical treatment and care—even when treatment and care is needed.
Doctors need to listen more to the patient
When asked what single intervention would most improve doctor-patient relationships, the groups cite “enhancing the communication-and-understanding skills of the healthcare professional” as their main choice, second only to “the provision of treatment and care that improves quality of life”. In Australia, Italy, New Zealand and the UK, improving doctors’ communication-and-understanding skills is ranked first, as the most important way of improving doctor-patient relations. Groups representing the interests of patients with cancer and HIV/AIDS also see such a development as the favoured way of improving doctor-patient relations among the patients in their disease specialties.
About the survey
What do patients think of doctors? is based on the results of a November 2010 PatientView survey of 2,500 patient groups from around the world. The survey asked the respondent groups what they think of current doctor-patient relationships, and how they believe those relationships might be improved.
The report covers most subject areas in which patients would like doctor-patient relations to be improved, including: l Access to health professionals l Access and choice during diagnosis and treatment l Patient information provided by health professionals l Doctor-patient communication l Gaining patient trust l Respecting patients’ valuable time l Accountability of health professionals l Improving prevention practices l Which single action do patients want from government and payers to improve doctor-patient relationships? l Which pharmaceutical companies are having a positive effect on doctor-patient relationships? l Why pharma can have a negative impact on doctor-patient relationships.
The report analyses doctor-patient relations in 11 countries and one region of the world: Australia [number of completed responses = 60]; Canada [138]; Eastern Europe [105]; France [80]; Germany [100]; Italy [110]; the Netherlands [30]; New Zealand [55]; Spain [80]; Sweden [56]; the UK [566]; and the USA [292].
Doctor-patient relations are also analysed for the following 12 specialties: cancer [160]; diabetes [55]; gastro-intestinal [40]; heart and circulatory conditions [70]; HIV/AIDS [72]; mental health [170]; multiple sclerosis [35]; neurological [195]; Parkinson’s disease [30]; rare diseases [70]; respiratory [35]; and rheumatological conditions
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months