ANNOUNCEMENT: OTTAWA 2011 UPDATE
by Lydia Neilson
Dear Friends:
Re: International IACFS/ME research & clinical
conference for ME/CFS, FM & related illnesses
I just wanted to bring to your attention that the complete programs for both the Professional and Patient/General Public conferences as well as registration details are now easily available on the IACFS/ME website at http://www.iacfsme.org and can be accessed from its Home Page.
Frequently Asked Questions (FAQ) are also on the Home Page.
The Ottawa Delta City Centre where the conference is being held here in Ottawa can also be found on the site and a link to the Ottawa Tourism Bureau.
There was a computer glitz at the Delta Hotel which has now been fixed so some of you may have gotten wrong information about availability. If you have any problems, please let us know.
Will keep you updated on developments.
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
13 years, 12 months
ANNOUNCEMENT: STATISTICS CANADA 2010 CFS,FM & MCS DATA
by Lydia Neilson
Statistics Canada releases new data on CFS, FM and MCS
June 21, 2011
The first data from the 2010 Canadian Community Health Survey (CCHS) was released today.
The data show that the number of Canadians reporting a diagnosis of Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities has increased markedly since 2005.
Number of Canadians reporting a diagnosis of
CCHS 2005
CCHS 2010
% change
Chronic Fatigue Syndrome
333,816
413,370
24%
Fibromyalgia
389,782
446,586
15%
Multiple Chemical Sensitivities
598,585
784,798
31%
Target Population
27,125,065
28,890,710
7%
A 2010 data file with the CFS, FM and MCS variables is now available to government and academic institutions. No information about these illnesses, other than what is in the above table, has been made available to the National ME/FM Action Network or the public at this time.
Margaret Parlor
President
National ME/FM Action Network
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
13 years, 12 months
ANNOUNCEMENT: LYME APPEARS TO HIDE IN LYMPH NODES
by Lydia Neilson
Lyme disease bacteria take cover in lymph nodes, study finds
June 8, 2011
The bacteria that cause Lyme disease, one of the most important emerging diseases in the United States, appear to hide out in the lymph nodes, triggering a significant immune response, but one that is not strong enough to rout the infection, report researchers at the University of California, Davis.
Results from this groundbreaking study involving mice may explain why some people experience repeated infections of Lyme disease. The study appears online in the journal Public Library of Science Pathogens at: http://tinyurl.com/3vs8pm9.
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
13 years, 12 months
ANNOUNCEMENT: NEW HAMPSHIRE PASSES LYME BILL
by Lydia Neilson
N.H. doctors can now treat Lyme disease with long-term antibiotics
By JENNIFER KEEFE
jkeefe(a)fosters.com
Friday, June 17, 2011
DOVER — New Hampshire residents suffering from chronic Lyme disease will no longer have to worry about finding a doctor who will treat with long-term antibiotics.
A bill, HB 295, that states doctors are free to treat Lyme disease with long-term antibiotics and cannot be punished by the Board of Medicine because of such prescriptions was passed Thursday.
The bill's prime sponsor Gary Daniels, R-Milford, said the bill is an important step in helping both patients and doctors as it acknowledges chronic Lyme disease is a real ailment.
The text of the bill reads, "No licensee may be subject to disciplinary action solely for prescribing, administering, or dispensing long-term antibiotic therapy for a patient clinically diagnosed with Lyme disease, if diagnosis and treatment has been documented and monitored in the physician's medical record for that patient."
Daniels said Thursday, "The problem we were encountering, and it seems to be a nationwide trend, is there are two standards for treatment and there seems to be favoritism over one standard that basically says there's no such thing as chronic Lyme disease."
He added that typically, if people have Lyme disease for longer than the four week average associated with the disease, they're instead treated for other diseases such as fibromyalgia or chronic fatigue syndrome.
"There can be such a thing as chronic Lyme disease and it can be treatable with long-term antibiotics," Daniels said.
He said doctors would often avoid treatment with long-term antibiotics due to fear of being brought up on charges by the Medical Board simply because it wasn't recognized as the appropriate treatment for Lyme disease. Patients would therefore have a hard time finding doctors in New Hampshire to treat the disease and would often seek help in other states.
"We're trying to set in place an environment where doctors are free to treat with long-term antibiotics and the bill says they can't be punished solely because they prescribe or administer long-term antibiotics," Daniels said.
The bill's language regarding long-term treatment with antibiotics is only in reference to Lyme disease.
Daniels said such a move just makes sense, especially when long-term antibiotics are already used to treat for many other diseases such as acne, and cancers.
New Hampshire, he said, has the highest incidence of Lyme disease per capita in the country, a statistic that played a large role in his sponsorship of the bill. He had been asked to bring the issue out into the open by a friend who suffered from Lyme disease for five years before she was diagnosed.
Daniels said the hope is Lyme disease and the instance of chronic Lyme disease will be better publicized and better understood because of this legislation.
And the overwhelming number of members of the public who came to speak at a recent hearing on the bill, Daniels said, "at least dispelled the argument that there's no such thing as chronic Lyme."
The bill has become law but was not signed by Gov. John Lynch.
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
13 years, 12 months
ANNOUNCEMENT: WEB TV PRESENCE FOR CFS
by Lydia Neilson
June 08, 2011 05:00 PM Eastern Daylight Time
Chronic Fatigue Syndrome to Get Web Television Presence
WASHINGTON--(BUSINESS WIRE)--A new Web-based television program aims to shine a light on Chronic Fatigue Syndrome, sometimes referred to by patients as “the living death” disease. The disease also is known by its old name – and the one favored by many patients – myalgic encephalomyelitis.
“In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS”
The program is called “M.E./CFS Alert” and can be accessed on the You Tube Channel LIMFIL88. The program will soon be accessible at www.whchronicle.com, the Web site of the weekly news and public affairs television program “White House Chronicle.”
The program was conceived by Llewellyn King, a Washington columnist and executive producer and host of “White House Chronicle” and Deborah Waroff, a New York writer and security analyst, who has suffered from the disease for 22 years.
“This is a terrible, debilitating and essentially lifelong disease which, like AIDS, suppresses the immune system. Our program has three objectives: to comfort the suffering; to change attitudes among physicians and medical institutions, and to implore the government to provide critically needed research funds,” Waroff said.
An estimated 1 million Americans are so severely impacted by the disease that for months and years they are house-bound. Worldwide some 17 million have lost the ability to lead normal lives and work.
Often those who have suffered total physical collapse are ostracized because of bigotry and ignorance. Institutions, like Britain's National Health Service, treat M.E./CFS as a psychiatric disease, even though patients are in great physical pain.
The disease knows no economic, geographic or social boundaries. Author Laura Hillenbrand is the best-known American victim.
“In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS,” King said.
The first program is an interview with pioneering M.E./CFS doctor Derek Enlander.
Contacts
White House Media LLC
Llewellyn King, 202-662-9731
lking(a)kingpublishing.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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
14 years
ANNOUNCEMENT: LETTER TO THE DSM-5 TASK FORCE
by Lydia Neilson
Dear Friends:
As you know, we are all concerned about the proposed DSM-5 manual manual of psychiatric diagnoses by the American Psychiatric Association scheduled for release in 2013.
Our President, Margaret Parlor, has written the DSM-5 Task Force on behalf of the National ME/FM Action Network and the ME/CFS community to place our voice on record and is shown below.
As President, Dr. Fred Friedberg, of the IACFS/ME stated, it is important to let our voices be heard as a classification of a psychiatric disorder for ME/CFS would be a "major setback to our community in our ongoing efforts to legitimize and increase recognition of the illness."
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
For the attention of the Somatic Symptom Disorders Work Group :
The National ME/FM Action Network works on behalf of Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. Our organization was founded in 1993 and has many accomplishments to its credit. A leading accomplishment was spearheading the development of the Canadian Consensus diagnostic and treatment protocols for ME/CFS and Fibromyalgia. These criteria are receiving strong international support. Another major accomplishment was publishing statistics on these conditions. Our analysis, based on a major Statistics Canada survey, showed that there were 628,500 Canadians diagnosed with one or both of these conditions in 2005 and that they experienced high degrees of disability, disadvantage and unmet needs in comparison with other chronic illness cohorts.
Diagnostic criteria are very important. DMS-5 will be used to determine who qualify for psychiatric services. Criteria are problematic if they result in false negatives (people who do not qualify for services but who would benefit from them) or false positives (people who qualify for services do not benefit from them). We are concerned the proposed new category for Chronic Somatic Syndrome Disorder (CSSD) will result in an unacceptable number of false positives in the ME/FM community.
A fundamental question is how psychiatry can help patients with ME/CFS and Fibromyalgia.
Some psychiatrists have proposed Cognitive Behaviour Therapy as a treatment for Chronic Fatigue Syndrome. A recent UK study examined the benefits of CBT for patients with CFS. Patient groups have pointed out numerous issues around the study design and how study population was selected and would reject the study as badly flawed. However, even taking the study at face value, the study showed that CBT was of minor benefit to patients, akin to the benefits of CBT for other chronic illnesses. CBT does not get to the heart of the illness. ME/CFS and Fibromyalgia are not psychiatric disorders.
Our position on the role of psychiatry is simple and clear. We think that psychiatry should play the same role for ME/CFS and Fibromyalgia patients as it does for patients with other chronic physical illnesses like cancer, diabetes or arthritis. Those patients receive psychiatric support if and only if psychiatric issues are apparent after medical and social supports in place. We would like to refer you to a document entitled “Assessment and Treatment of Patients with ME/CFS; Clinical Guidelines for Psychiatrists” by Dr. Eleanor Stein, a Canadian psychiatrist. This document describes an appropriate role for psychiatrists in assessing and treating ME/CFS, respecting the reality of the illness.
Over the years, we have heard many stories from patients with ME/CFS or Fibromyalgia who went to a doctor for help only to be fobbed off to a psychiatrist because the family doctor did not believe their symptoms or did not know how to help, rather than because the patient needs psychiatric services. This situation does not help patients – it denies their experiences, it undercuts their credibility and it distracts from their real issues. This situation does not help psychiatry either as it is called upon to solve problems that it cannot solve.
The new Complex Somatic Syndrome Disorder category could compound this situation. A patient with ME/CFS or Fibromyalgia would get a diagnosis of CSSD if a doctor believes the patient is overreacting to the illness, even if the patient is actually behaving very rationally. The patient would be labelled with a undeserved, unhelpful and misleading psychiatric label which would make dealing with the core health issues even more difficult than they already are.
The CSSD category could be very harmful to patients with ME/CFS and Fibromyalgia. We ask you to refrain from including CSSD in DMS-5 in the absence of protections to ensure that patients with ME/CFS and Fibromyalgia do not receive false positive diagnoses.
Margaret Parlor
President
NATIONAL ME/FM ACTION NETWORK
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
14 years
ANNOUNCEMENT: VIVINT CONTEST TO HELP FUNDRAISING
by Lydia Neilson
There is an Event set up on Facebook on behalf of the National ME/FM Action Network for a chance to win $100,000. Please join and you will get daily reminders to vote with link to click and vote- it then is super easy and takes 2 seconds.
Feel free to pass it on to Facebook friends, email friends with Facebook, and any other media to get more attention.
A great opportunity to support those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Fibromyalgia.
Vote Daily for National ME/FM Action Network in Vivint Contest June 14 - Aug 27th.
HOW?
Vote every day from June 14 through Aug 27th.
It's easy - just go to http://www.vivint.com/givesbackproject/charity/855 on Facebook.
click LOGIN then scroll to the bottom and click ENDORSE.
The first time you vote you may be promoted to LIKE the Vivint page
http://www.facebook.com/VivintHome.
A daily reminder message will be sent to you with the link.
----------------------------------
WHO AND WHY?
Help the National ME/FM Action Network win $100,000 by placing first in the Canadian Region in the Vivint Contest. The National ME/FM Action Network is the host of the International IACFS/ME Scientific Conference being held in Ottawa Sept 22-25. The International Clinical and Research Conference is called "Translating Evidence into Practice" for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
This conference is vital to allow scientists to meet and learn about the lastest information about ME and FM. See www.iacfsme.org for more information about the conference.
The National ME/FM Action Network spearheaded the drive for a clinical case definition, and diagnostic and treatment protocols for ME/CFS and FM, The Canadian Consensus Guidelines!
Remember: Vote every day from June 14 through Aug 27th.
For more Facebook info go to:
https://www.facebook.com/event.php?eid=110293289062328
There will also be updates and comments posted there
Pass it on.
Thank you for your support.
The National ME/FM Action Network Facebook Team
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
14 years
CORRECTION
by Lydia Neilson
Sorry everyone, the IACFS/ME website address should read
http://www.iacfsme.org
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
14 years
ANNOUNCEMENT: OTTAWA 2011 UPDATE
by Lydia Neilson
Dear Friends:
The conference detailed agenda and registration information for both the medical professionals and patient/general public is now available at the website of the IACFS/ME at http://www.iamecfsme.org
There is also a FAQ for frequently asked questions conveniently placed on its Home Page.
You can register online,fax or mail in your registration forms along with payment. Either Canadian or American funds are accepted. Please make cheques payable to the IACFS/ME.
For updates on the conference, you can also visit the National ME/FM Action Network, host of the International IACFS/ME Conference at http://www.mefmaction.net
To contact the IACFS/ME by phone, call 847-258-7248
By Fax: 847-579-0975
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
14 years
Sorry
by Lydia Neilson
Dear Friends:
It looks like I was deceived and learned another lesson. I'm terribly sorry for my last email about Don't Dance. It is spam.
I humbly apologize for my error.
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.com
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit:
Member of www.iacfsme.org
14 years