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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.

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

 

Guest Blog: Bill Clayton – MY M.E. STORM

Guest Blog: Bill Clayton – MY M.E. STORM

MY M.E. STORM

I can feel the storm clouds forming
All around my head
I should have stopped my ‘doing’
And rested more instead.

The soft patter of the raindrops
That turn into a thud
As my mind it slows as the downpour grows
Turning every thought to mud.

My scrambled brain
Is like thundering rain
I cower from the merest light
Like a laser beam, that noxious stream
Makes me hide from its line of sight

The wind gathers pace
As it reaches my face
It locks my jaw in jail
Words cannot be formed
Nerve ends are stormed
In a batter of blistering hail.

The rumble of thunder
Soon drives me under
My senses are now so inviting,
The noise of a page, as it turns, causes rage
Like being hit by a bolt of lightning.

The darkening skies, have closed my eyes
Caused my limbs to spasm
From thought to deed,
My body concedes
Is forged an unbridgeable chasm.

Can’t take in the spoken word
Just makes no sense, so absurd
Simple chat I have to concede
Rolls over me, like tumbleweed.

Not just tiredness,
Not just fatigue,
This is in a different league
These storms are causing me to drown
I can feel my body closing down.

I know in time the sun will shine
We’ll see the shoots of Spring
But a wind of change is what we need
To help us beat this thing.

We won’t go under,
Without causing some thunder
A volcano of hot angry fire
We’ll rise as one voice,
making some noise
Awareness is what we desire.

I know that together,
We can change this bad weather
So let’s be in it as one
Let’s keep up the fight, with all of our might
And we’ll enjoy our day in the sun.

By Bill Clayton

Guest Blog by Greg Crowhurst – Stonebird: Breaking the Silence

Guest Blog by Greg Crowhurst – Stonebird: Breaking the Silence

The following is a guest blog by Greg Crowhurst about Severe ME. Note August 8th is Severe ME Day.

“I broke the silence on October 12, 2006; that day I believe we were the first to raise awareness on YouTube of the incredibly serious nature of Severe ME.

These days my wife is infinitely more ill than she was then. I am still speaking out, Stonebird, is my platform. That video was the beginning.

Facebook had just been invented, the first tweet had just been sent, there was no such thing as an iPhone, but there were over 100 million websites.

And a pressing need for a ground-breaking Severe ME site.

Most ME websites back then and still today, do not seem to take into account the complex visual, movement, colour and cognitive difficulties, that people with ME can experience. They are often way too wordy or have fast moving or flashing images, painful garish colours and masses of complex information far too long and detailed to follow or hard to find. Site navigation is often dire.

I wanted to build an ME-friendly website.

But first, I had to learn web design!! I took a book out of the library, it seemed hopelessly complicated and impossible to understand.

So, there I was trying to figure out how to build Stonebird. As you can see, eventually I succeeded!

www.stonebird.co.uk

As an unwaged, full time carer, it was not easy, but I managed to get a carer grant to learn how to write HTML and CSS, then built Stonebird as part of the course (gaining a distinction!). I was hooked by then and with another grant under my belt, spent a further year learning how to code in JavaScript, so I could add interactivity to websites.

These days I study web design at every opportunity.

My beloved wife is diagnosed with a very severe form of Myalgic Encephalomyelitis that is nothing like the fatigue focused, minimized illness that you will see misrepresented as ME in general today; the idea for Stonebird came from her.

I had literally bought her a stone bird, in a local craft shop to look at when she was most ill and perhaps hold or touch for comfort. She loved its shape and feel, the coolness of the stone, the beauty of the curves. It reminded her of herself, trapped inside her body, but still there was a beauty, a spirit, that is indomitable and intrinsically of value, even when nothing is physically possible. Still your heart can shine.

A passionate belief in the value of each and every person, no matter how ill, how battered, how tormented, how hidden and physically unable, because of ME, was the genesis of Stonebird and is the light that we shine, the battered flag that we hold aloft still.

These days Stonebird is respected around the world, as a valuable resource for people with Severe ME and their carers. Recently I had to update it; Google are heavily pushing for websites to be fully responsive on all web platforms, mobile and desktop; what a steep learning curve!

Web design keeps you on your toes, in terms of continual learning, as does caring for someone with Severe ME. I find I constantly have to grow in awareness of the profound and complex needs of my wife and my responses. I cannot afford to ever get stuck.

After over two decades of caring for Linda, I was thrilled to be shortlisted by the British Journal of Nursing and was one of three finalists for the Nurse of the Year Award 2015. As my gift to people with Severe ME for their support, I created and published a free App, on caring for people with Severe ME, The Moment Approach; it aims to raise awareness of the vital need to understand the illness and the devastating hypersensitivities.

You have to keep dreaming. I wondered could I publish a book unlike any other on ME, illustrate it, format it as a manual, make it carer-centred, make it self-reflective, make it informative, interesting to pick-up and above all make it inspiring ?? After immense effort, Severe ME: Notes for Carers has just been released. I hope it helps.

http://stonebird.co.uk/Notes/

I vowed long ago I will raise awareness of the awful suffering and isolation of Severe ME, shout it from the rooftops. So I broke the silence, came up fighting.”

Guest Blog by  Rosalynde Lemarchand  – M.E. Groundhog Day

Guest Blog by Rosalynde Lemarchand – M.E. Groundhog Day

Well here we are again.

It’s May 12th – International M.E./CFS & FM Awareness Day

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases).

Mr. Hennessy was based in the US but understood that it needed to be an International event. He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).

May 12 was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.

A few years ago I wrote a poem for 12th May and it seemed appropriate to call it M.E. Groundhog Day (after the film of that name where the same day is repeated over and over again).

It can feel as if we are stuck in the same way. In order for things to change we have to reexamine our lives and our priorities. In order for things to change we need to keep raising awareness and understanding.

Once again I’m reflecting on whether anything has changed since last year.

Sadly there are still too many in the medical profession who know nothing or very little about M.E.

Sadly too many are struggling on their own with this illness and receive little or no help and support.

The most severely affected are left in a living hell.

Sadly there are many who are still disbelieved and abandoned by family or by friends.

Sadly too many have to fight for benefits and to prove that they are genuinely and seriously ill.

Sadly still not enough money is invested into research of M.E.

Sadly more time, money and effort seems to be wasted on the appropriate name which only causes more confusion and conflict.

However there are some glimmers of hope with new studies taking place and some studies that have recently published results providing further evidence that M.E. is a real physical illness.

At least we now have inter-active social sites on the internet which help provide information, help, support, and a stage to raise awareness and understanding as well as to promote campaigns.

Personally I have been trying to raise awareness and understanding by writing poetry. Through my poems I have been able to express not only how I feel but others as well. My poems are a window on what it’s like to live with M.E.

You can find more about me and my poems in my blog here

I have pledged that in May all the sales of my book will go to Invest in Me

Additionally, in 2015 I’m well on my way onto completing book number two of poems about M.E.

There is still so much I want and need to write about.

So what are you going to do this year?

Perhaps you could share my poems and my blogs to help others to understand.

Thank you,
Ros Lemarchand

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