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International Awareness Day

for  Chronic Immunological and Neurological Diseases (CIND)
MEES/MCS  • FM  • GWILYMECFS
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Online Support Group: April 18, 2023

Online Support Group: April 18, 2023

You are welcome to join a free, professionally-facilitated online support group on Tuesday, April 18
run by the Bateman Horne Centre.
 
 
3 PM ET/8 PM in Great Britain & Ireland
 
Topic: Relationships & Intimacy
 
Support Group Format
 
The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour. Both of the monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.
 
Facilitator
 
These sessions are led by Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness.
 
 
Advance Registration Required: 
Awareness Day Webinar with Dr. Eleanor Stein May 12, 2023

Awareness Day Webinar with Dr. Eleanor Stein May 12, 2023

On May 12, 2023 at 2pm we are pleased to host Dr Eleanor Stein MD, FRCP(C), a Canadian physician that has dedicated her practice to helping people diagnosed with ME, FM, CFS & ES/MCS.
 
 
Her research has advanced our understanding of the complex relationship between environmental exposures, chronic stress, and neuroplasticity, and has opened doors to potential treatment approaches for these conditions.
 
 
Dr. Stein will spend time during this May12th Awareness event to provide some insight to neuroplasticity & to answer any questions you may have about it & these illnesses.
 
 
Neuroplasticity can help patients suffering from a vast number of illnesses. To help you understand what neuroplasticity can/can’t do for you, & how you might use it, Dr. Stein will draw on cases where she has seen unexpected gains as well as 5 scenarios to illustrate this fascinating topic.
 
The cases include:
  •  A patient has MCS – Dr Stein has had great success with her MCS symptoms. How can this patient reduce the severity of her symptoms?
  • A patient has osteoarthritis in her feet. She needs orthotics but it puts too much pressure on the top of her foot. She wants her feet cut off she’s in so much pain. Can she get control of the pain & how?
  • A man underwent successful surgery to remove a benign brain tumour. He’s gone from fitness enthusiast to little motivation, brain fog & unable to work. Can neuroplasticity help him & begin to feel better?
  • A man has just been diagnosed with Parkinson’s. How can neuroplasticity be used to slow the progression?
  • A women had a nerve to her bladder nicked in surgery resulting in feeling a frequent need to urinate. Can neuroplasticity dial down these feelings? How would she reduce the need to urinate?

Please submit any questions you may have in advance via our contact page.

 
And please share the notice of this webinar to anyone that might be interested!
 

About Dr. Stein

Dr. Stein’s pioneering work has centered on understanding how the brain’s plasticity, or its ability to change and adapt, can be affected by environmental exposures and chronic stressors, leading to the development of MCS and CFS. Her research has shown that repeated exposure to environmental toxins, such as chemicals, mold, or other allergens, can disrupt normal neural pathways and trigger abnormal responses in the brain, leading to heightened sensitivity to these substances and resulting in symptoms such as fatigue, cognitive impairments, and sensory sensitivities.

Through her studies, Dr. Stein has also uncovered the role of chronic stress and its impact on neuroplasticity in the context of MCS and CFS. She has found that prolonged stress can alter brain function, leading to changes in neural connectivity and neurochemical imbalances, which can contribute to the development and persistence of these conditions.

Dr. Stein’s research has not only advanced our understanding of the underlying mechanisms of MCS and CFS but has also opened doors to potential treatment approaches. Her work has highlighted the importance of addressing both environmental triggers and stress management in the management and treatment of these conditions. Her findings have also pointed towards the potential for neuroplasticity-based interventions, such as cognitive-behavioral therapies, mindfulness techniques, and neurofeedback, to help modulate brain function and reduce symptoms in individuals with MCS and CFS.

‘Delivering Together’  Conference in UK May 12, 2023

‘Delivering Together’ Conference in UK May 12, 2023

On May 12, 2023, the National Institute for Health and Care Excellence (NICE) will be hosting an event titled “Delivering Together: New NICE Guidelines for ME/CFS”. This event aims to provide an overview of the updated guidelines for the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

The event will be hosted by Dr. Paul Chrisp, Director of the Centre for Guidelines at NICE, and will feature several expert speakers in the field of ME/CFS. The speakers will include:

  • Dr. Luis Nacul, Director of the CureME Biobank and ME/CFS Epidemiology and Genomics Alliance (MEGA) research group.
  • Dr. Alastair Miller, Consultant Neurologist at NHS Greater Glasgow and Clyde.
  • Clare Ogden, CEO of the ME Association.

The event will begin with an introduction from Dr. Chrisp, who will emphasize the importance of the new guidelines in improving the diagnosis and management of ME/CFS. He will explain that the guidelines were developed based on the latest scientific evidence and were created in consultation with patients, carers, and healthcare professionals.

Dr. Nacul will then give a presentation on the epidemiology and diagnosis of ME/CFS. He will explain that ME/CFS is a complex and debilitating illness that affects around 250,000 people in the UK. He will also highlight the challenges in diagnosing ME/CFS, such as the lack of objective diagnostic tests and the overlap of symptoms with other conditions.

Next, Dr. Miller will discuss the management of ME/CFS. He will emphasize the importance of a holistic approach that addresses the physical, psychological, and social aspects of the illness. He will also highlight the need for individualized management plans that take into account the patient’s preferences and circumstances.

Finally, Clare Ogden will share her personal experience of living with ME/CFS and discuss the importance of patient advocacy in improving the diagnosis and management of the illness.

Overall, the “Delivering Together: New NICE Guidelines for ME/CFS” event will provide valuable insights into the latest guidelines for the diagnosis and management of ME/CFS. The event will emphasize the importance of a patient-centered approach that takes into account the individual needs and circumstances of each patient. It is hoped that the new guidelines will help to improve the lives of those living with ME/CFS and increase awareness of the illness among healthcare professionals.

Living with ME (ME/CFS) November 9, 2021

Living with ME (ME/CFS) November 9, 2021

What Is It:

  • Education session for ME (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Developed and presented by Patients Helping Patients, a group of ME Patients with direction from medical advisor Dr. Eleanor Stein.
  • Topics include signs & symptoms of ME, strategies for symptom management, keeping hope alive and excellent resources.
  • Evidence indicates similarities between Long Covid and ME. Those with Long Covid may find this session useful.

Who Can Attend:

  • Patients, Caregivers, Friends, Family and Healthcare Providers – ALL are welcome!

 

Where & When:

Online Presentations

  • 2 Hours starting at: 11:00 am PT, 12:00 pm MT, 1:00 pm CT, 2:00 pm ET, 3:00 AT

Tuesday, November 9, 2021 Register at:

https://us02web.zoom.us/webinar/register/WN_hghNigEZSoq4oQSztDpw1w

May 12, 2017 – 25th Anniversary of International Awareness Day

May 12, 2017 – 25th Anniversary of International Awareness Day

May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Fibromyalgia (FM), Gulf War Illness (GWI) and Multiple Chemical Sensitivity (MCS/ES). The illnesses listed above share many of the same symptoms and generally occur together. Symptoms include disrupted sleep, chronic fatigue, cognitive impairment, short term memory loss, muscle pain, joint pain, headaches, and dizziness.

Overlooked by Doctors

Even though these illnesses affect vast numbers of people, they are often overlooked or given limited attention in facilities that train medical professionals. Government funding for these ‘’hidden disabilities’’ is minuscule and many practicing doctors still harbor the outdated belief that these illnesses are psychological disorders, which is why the majority of people with these chronic syndromes find themselves inappropriately referred for psychiatric evaluation. These syndromes are also often misdiagnosed because their symptoms resemble those of other serious conditions, such as depression, rheumatoid arthritis, lupus, or other autoimmune diseases.

Dismissed by the Public

The general population, on the other hand, attribute these illnesses to extreme forms of laziness and depression, when in reality, they are caused by insufficient energy production, weak immune systems, hormonal imbalance, and detoxification problems. But regardless of how many medical test abnormalities patients with these illnesses display, they have a hard time getting approval for workplace disability. Insurance companies frequently deny benefits or coverage, thus forcing many doctors who recognize the disease to diagnose it as something else. And due to lack of insurance coverage and poor quality of care, many patients completely drop out of the medical care system to end their lives.

How You can Help!

If you feel like the lives of those afflicted with CIND matter to you, then I hope you will join in and help raise awareness on May 12th or sometime during the month of May. This year marks the 25th anniversary of May 12th so we want as many people as possible to get involved and so something this year. It doesn’t have to be big. The little things really add up.

Here are a few things you can do:

  • Donate to Action CIND at www.actioncind.org so we can grow and do more.
  • make your own custom clothing (i.e. a t-shirt, bag, baseball hat etc) with a  May12th logo.
  • Contact your local radio and television stations and ask them provide coverage.
  • Educate yourself and others. Tell one person about it and ask them to tell one person so we get exponential increases in people that are informed.
  • Go to www.fibroduck.com and get some Ducks out there!
  • Follow us on Twitter (@may12th, @ActionCIND) and Facebook (www.facebook.com/ActionCIND and www.facebook.com/may12th.awareness) and like, share and retweet our posts.
  • Follow the events planned at www.bit.ly/May12th2017 and let us know if you have an event to be added.

You can also join us for the 3rd Annual International Light Up the Night Challenge on May 12th. The challenge is to light up a public or private building in your town Blue, Purple, or Green. Take a photo of the building and submit it to info@may12th.org and include your city and country. Photos will be posted at www.facebook.com/may12th.awareness

For more awareness ideas go to https://www.may12th.org/pdf/May12th-Awareness-Ideas.pdf. If you have more ideas, let us know so we can update the list.

Let’s make the 25th year the best one yet!

May 12, 2016 – International Awareness Day for CIND

May 12, 2016 – International Awareness Day for CIND

Today is May 12, 2016 and the 24th anniversary of May 12th International Awareness Day for Chronic Immunological and Neurological Diseases (CIND).

We’ve come a long way since the launch of this event by the late Thomas Hennessy JR. We accomplish more every year. While there is still so very much to be done, you should know however, that we will accomplish our goals and one day these illnesses will exist only in the history books.

The snowball has been made and it has started its journey down the hill growing in size with every inch it travels.  It is now unstoppable. It will continue to grow daily until it’s so large there will be a massive breakthrough.

Our team of volunteers are determined to see that the snowball progresses at a much faster rate and along its way, we will help to implement changes to improve the quality of life for individuals impacted by CIND illnesses like Myalgic Encephalomyelitis, Fibromyalgia and Multiple Chemical Sensitivity.  We will strive to allow these individuals to live life with dignity, respect and support.

To that end, the May 12th team has taken a bold step this past year to help us reach our goals. We decided in December 2015 that it was time to formalize our team structure and turn it into a registered charity so that we can have even greater impact. We shifted some of our efforts temporarily away from May 12th for this year only, and began the work required to create an organization and obtain charitable status. It’s been a tremendous challenge, but in just a few short months we are well on our way.

Our new organization, Action CIND, was founded, registered as an incorporated non-profit and our charitable status application was submitted. It is currently under review by the authorities. We crafted what we feel is a strong application and we’re hopeful it will be approved once it’s reviewed later this year.

Our mission is to advance the recognition, empathy, treatment and support services for Chronic Immunological and Neurological Diseases (CIND) by raising awareness, advancing research, developing education, establishing treatment centres, providing information and support services and collaborating with other organizations in Canada and internationally.

We’re assembling a strong team and have taken on a tremendous challenge. We look forward to working with individuals and existing organizations to bring about the change the CIND community so desperately requires. We look forward to bigger and more impactful May 12th initiatives.

Next year is the 25th anniversary of May 12th. We must make it a day to be remembered. I invite all of you to contact us at info@may12th.org and share your ideas for next year. We’ll also need many more volunteers and donations, so please let us know if you can help out in these areas too.

For now, please take advantage of this day to tell one person about it. Ask them to tell one person and to request that individual also tell one other person. If we all do this, the number of people in the world that will learn about the illnesses will grow exponentially. It’s a simple thing to do, yet it could have a very significant impact. Will you do it?

I’ll close by thanking Sally Burch for once again running the #May12BlogBomb this year. It’s always a great success. I encourage you to read about it on her blog http://sallyjustme.blogspot.ca/.

On behalf of the Action CIND team, I thank all of you for helping to make this another successful May12th. Every little thing you do will help bring us one step closer to conquering these very disabling illness. I look forward to hearing your ideas for the 25th anniversary and working with you in the days ahead.

Sincerely

Alison Rae
Board Chair and CEO
Action CIND

 

Welcome to the May 12th Blog!

Welcome to the May 12th Blog!

 

Today is the 23rd anniversary of May 12th International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). This awareness day was founded in 1992 by the late Thomas Hennessy Jr. The diseases included in CIND include Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS), Lyme and Multiple Chemical Sensitivity (MCS).

We are on a mission to bring awareness around the world for this community of people living with these illnesses. May 12th International Awareness Day is a chance for the millions of people devastated by these diseases to be seen and heard! It’s estimated that 25% are severely impaired. These illnesses are real; the people are real; and they need help NOW!

There is a long list of activities planned for this day and throughout the month of May. They range from very small to large complex events. Everyone one of them will help to make this the best May 12th yet. We especially look forward to seeing landmarks and private homes Light Up the Night with our colours – blue, green and purple. It is truly a sight to behold.

We also look forward to reading all the blogs that are participating in the #May12BlogBomb event being coordinated by Sally Burch. Our submission today has extra meaning to us as it is also the launch of the May12th Blog. Our website has been refurbished and expanded to include this blog. We hope it will be another tool to help us get the word out.

We believe with awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists.  A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

We sincerely hope that everyone will do something today. We ask that you tell one person about May 12th and ask that person to tell one other person. If everyone can do this simple task, there will be a wave of awareness across the globe. Raising awareness will give us credibility in our quest for treatment and a cure and hope for a better tomorrow.  Our future depends on it.

To quote Helen Keller – “Alone we can do so little; together we can do so much.”

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