Information

Various information is included on this page, including:

 

News

 

Announcing a $1.4 million Grant for Myalgic Encephalomyelitis (ME)

The federal health minister, Hon Ginette Petitpas-Taylor announced a $1.4 Million grant on  August 22, 2019 for an Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

The government has provided $1.4 million via a Canadian Institutes of Health Research (CIHR) grant to fund ME research. It will be led by Dr Alain Moreau. Action CIND will be actively involved in the new network.

The press release was very moving and well done. Action CIND Director Christiane Garcia was one of the key guest speakers.  She also gave several outstanding media interviews that week.   The press release and link for the video recording (scroll to the bottom) are available online:

In French: https://recherche.chusj.org/fr/Communications/Nouvelles/2019/Le-gouvernement-du-Canada-investit-1-4-M$-dans-la

In English: https://research.chusj.org/en/Communications/Nouvelles/2019/Le-gouvernement-du-Canada-investit-1-4-M$-dans-la?crawlerid=d3bd64f8-dd83-4457-b857-cee4e9bdc73e&cidhash=be8f831b234b35ef4f272965a57e232b350d97103977ef98c29590fa5566c836

         

Hon Ginette Petitpas Taylor        Dr Karim Khan, CIHR                  Dr Alain Moreau

RUN4ME

#RUN4ME

The run was a great success! So far we’ve raised over $10,000 and we are still receiving donations. If you’d like to donate, please use the links below.  Many thanks to all of you that have supported us financially and to all that were involved.

Here are the events details:

Please join us on Sept 14th for Action CIND’s first annual #Run4ME. The event is a chance to raise funds for Action CIND’s Myalgic Encephalomyelitis (ME) Research Fund. Come as a participant or a spectator to cheer on our runners and walkers on a 1K/5K walk/run at Woodland Trails Scout Camp, in Stouffville ON. Festivities start at 1pm. Our location is part of Oak Ridges Moraine and is a beautiful spot to spend an afternoon of fun.

Whether you are a runner, walker, volunteer, patient, health care worker or supporter we encourage you to join the event to say thanks to the runners for raising funds for ME Research. We also have great items for our silent auction.  You can see what is available by going to our site www.run4me.actioncind.org/silent-auction.  Bring your children for fun and games after the runners have finished their race! 

Register today as a participant or a guest by going to www.actioncind.crowdchange.co/run4me to find more details. It will help us to know how many people to expect.

If you cannot make the event but would like to donate, please enter you donation at www.actioncind.crowdchange.co/run4me.

If you have any questions, please email run4me@actioncind.org.

We look forward to seeing all of you on Sept 14th at the 1st annual #Run4ME. It will be a great day full of fun activities and opportunities to help us raise funds for ME Research.

Webinars

 

The following webinars are scheduled this fall for education sessions on Life with ME/CFS.

Please register with the links provided below.

Sept 29 – https://zoom.us/webinar/register/WN_yhT5y9NGSae_9CWNHnnndg

Nov 27 – https://zoom.us/webinar/register/WN_J5mJd5HfROKvUnXzX20Lgw

 

May 12th

2020 marks the 28th anniversary of May 12th International Awareness Day. As one of our education initiatives, we promote the day around the world and encourage people to participate in in the many activities that are planned. Additional information can be found on our website www.may12th.org.

Suubscribers

Join Action CIND as a subscriber and receive additional benefits. The cost is $30 per year. Please complete this form and mail to our office. We are working on developing our benefit package. Currently we offer the following:

  • It is known that peer support can be very beneficial for individuals battling illness. Unfortunately for CIND patients, there are very few support groups available and many patients are not well enough to attend even if a group was available.  We are aware of an organization that provides an online self-help group. They are the CFIDS & Fibromyalgia Self Help Program (http://www.cfidsselfhelp.org/) . They have excellent programs you can take from home. They charge a nominal fee. To assist with the costs, Action CIND will make available to members in good standing, a bursary in the amount of $10 Canadian upon completion of one of their online programs.
  • Applying for CPP Disability and other coverages is a daunting task. Knowing what to do is a challenge. Our legal professionals have agreed to provide one pro-bono counselling session to any member in good standing that requires some support and direction. Often you can deal with the system on your own. Some do choose to hire professionals or legal aid due to the overwhelming nature of the task. Our lawyers will help you to understand the process so you can make informed choices.
  • For Ontario subscribers, our Disability Consultant has experience reviewing legal bills for disability support cases for any evidence of double billing. This issue has recently been reported in the Toronto Star. Our consultant will review your initial contract and legal bills, providing the bill was issued less than 2 years ago. Should there be evidence of over billing, they will recommend a course of action.
  • Our Disability Consultant is a former lawyer and past chair of the Canada Pension Plan review tribunals for the greater Mississauga and Toronto area. She has considerable experience assisting clients successfully apply and obtain disability benefits.  As a Disability Consultant, she has offered to speak with Ontario subscribers for 20 minutes free of charge, to understand your situation and assess your chances of getting accepted for these disability benefits. If you are interested in her services, she will offer a substantially discounted hourly rate to help guide you through the process of obtaining disability benefits. Certainly she can suggest things you can do to improve your chances of success.

Volunteer

Be part of our team! Volunteering allows you to directly participate in Action CIND program work. We are always looking for volunteers and can find you something that meets your needs. Please Contact US for more information.

Websites

The following list of websites are made available to help you find information about May 12th International Awareness Day, the illnesses or supporting organizations.

If you know of any items that should be added, please “Contact Us”.

Australia 

Australia

 

The Hummingbirds’ Foundation for M.E. (HFME) – www.hfme.org

Belgium 

Belgium

 

Belgium ME/CFS Association – www.me-cvs.be

R.E.D. Laboratories – www.redlabs.be

Canada 

Canada

 

Action CIND – www.actioncind.org

Association Québécoise de l’Encéphalomyélite Myalgique (AQEM) – www.aqem.org

Brockville M.E Association – www.brockvilleme-fm.ca

Environmental Health Association of Ontario – www.ehaontario.ca

Fibromyalgia London Group – www.fibrolondongroup.ca

Kitchener-Waterloo Fibromyalgia Support Group – www.kwfibromyalgia.webs.com

MEFM Societies of BC – www.mefm.bc.ca

ME Research – www.meresearch.info

Myalgic Encephalomyelitis Association of Ontario (MEAO) – www.meao.ca

National ME/FM Action Network – www.mefmaction.com

Nightingale Research Foundation, Canada – www.nightingale.ca

Nova Scotia Environmental Health Centre – www.cdha.nshealth.ca/environmental-health-centre

Waterloo Wellington Myalgic Encephalomyelitis Association – www.wwmea.ca

Denmark 

Denmark

 

Dansk ME Forening – me-foreningen.dk

Germany 

Germany

 

Fatigatio eV – www.fatigatio.de

Holland 

Holland

 

Het Alternatief – www.hetalternatief.org

International 

International

 

CINDpedia – www.cindpedia.org

International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis – www.iacfsme.org

Ireland 

Ireland

 

Irish ME/CFS Association – www.irishmecfs.org

Irish ME Trust – www.imet.ie

Italy 

Italy

 

Associazione Malati di CFS – www.associazionecfs.it

Norway 

Norway

 

Norges ME-forening – www.me-forening.no

Spain 

Spain

 

Liga SFC – www.ligasfc.org

Switzerland 

Switzerland

 

Verein CFS Schweiz – www.verein-me-cfs.ch

USA 

United States of America

 

CFIDS Association of America – www.cfids.org

CFIDS & Fibromyalgia Self-Help Program – www.cfidsselfhelp.org

Dr. Charles Lapp – Hunter-Hopkins Center – www.drlapp.net

Dr. Jacob Teitelbaum – www.endfatigue.com

Dr. Leonard Jason – DePaul University CFS Research – condor.depaul.edu/~ljason/cfs/

Environmental Working Group (EWG) – www.ewg.org

Health Rising – www.healthrising.org

International Association for CFS/ME – www.iacfsme.org

Invisible Diseases – www.invisiblediseases.com

MCS America – www.mcs-america.org

ME Action – www.meaction.net

ME-CFSKnowledgeCenter.com – www.cfsknowledgecenter.com

National CFIDS Foundation – www.ncf-net.org

National Fibromyalgia Association (NFA) – www.fmaware.org

Phoenix Rising – forums.phoenixrising.me

Prohealth Library – www.prohealth.com/library/index.cfm

Whittemore Peterson Institute for Neuro Immune Disease – www.wpinstitute.org

UK 

United Kingdom

 

Association of Young People with ME – www.ayme.org.uk

Dr Sarah Myhill MB BS – www.drmyhill.co.uk

Invest in ME UK – www.investinme.org

ME Association – www.meassociation.org.uk

ME Research UK – www.meresearch.org.uk

ME Support – www.mesupport.co.uk

Stone Bird – www.stonebird.co.uk

TYMES Trust (The Young ME Sufferers Trust) – www.tymestrust.org