Category Archives: Invisible Illness

Chilli ME Challenge

 

Do you remember the “Ice Bucket ALS Challenge” of last year?  Well, now, we have the “Chilli ME Challenge.”

Awareness for ME/CFS/SEID/CFIDS needs to be addressed and put forth in all media.  The need for research is dire.  There are many brilliant and talented scientists who are ready to continue their intense and costly experiments and “all we need” is more money from our government’s NIH (National Institutes of Health).

Although the number of sufferers of ME/CFS/SEID outnumber the combined number of patients who have MS, Lupus and HIV/AIDS, the amount of grants for ME/CFS/SEID research is only $5 million as opposed to $250 million for the other diseases named above.

ME symptoms

Below is a short video of one woman’s (Simone) acceptance of the challenge.  Before she eats the hot chilli, she gives a quick summation of most of the symptoms that people worldwide suffer with this disease.

 

Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain.

Here’s some very good ER advice for people with chronic illness and suffering pain.

Finding Out Fibro

What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)

A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.

A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.

Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does…

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Two ME Sufferers Are Interviewed For An ME/CFS Awareness Video

Thanks to Tom Kindlon for this ME awareness video.  Two ME patients answer pointed questions from Dr. Franky Dolan, regarding their symptoms and how having an “invisible, multi-symptom disease” has affected all aspects of their lives.

What is striking in this video (9 minutes; 40 seconds) is the seemingly happy, carefree vibes given off from the two women by their laughter and body language – until they seriously answer the questions.  This “mask” is the common outward appearance donned by very ill people when they are with those who are not ill.

Sadly, Amberlin, the woman on the left, wearing sunglasses due to light sensitivity (common with ME), died by suicide a few years after this video was made.  The seriousness of, and debilitation caused by, myalgic encephalomyelitis, has resulted in many suicides.

 

Science versus history: a snapshot of Invest in ME’s 10th annual conference

A most enlightening personal report of the Invest in ME’s 10th annual conference.

valerieeliotsmith

Introduction

On Friday 29 May 2015, the British charity, Invest in ME, held its 10th annual conference at the Institution of Mechanical Engineers in central London. It followed on from the two-day Biomedical Research Colloquium on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The scientists who were speaking at the Conference had already had the benefit of the Colloquium in which to discuss recent research developments and foster burgeoning relationships within the international ME/CFS scientific community.

I have lived with this illness for thirty-five years. A conservative estimate puts the number of ME/CFS patients worldwide at twenty million, although diagnostic uncertainty means that this figure could be wildly inaccurate. Despite having been well-known and documented for eighty years, the disease is still not widely recognised. There is no effective diagnostic pathway or treatment. Patients are still routinely neglected and abused; this results from the disproportionate power of the psychiatric lobby (especially in the UK) which continues to trumpet the highly inappropriate psychosocial model…

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May 12th: International M.E. Awareness Day

This is a huge Awareness week for ME (also Fibromyalgia and Multiple Chemical Sensitivities). Much preparation has gone into promoting awareness of this (ME) debilitating disease that takes patients’ lives away as they knew it before illness. I’m reblogging in order to continue promoting this disease so that more people might understand it. Well written.

Dead Men Don't Snore

This week is International M.E. Awareness Week, chosen to coincide with the birthday of Florence Nightingale who is thought to have suffered from M.E. during the last years of her life. It is also the Awareness Week for Fibromyalgia/FMS and Multiple Chemical Sensitivities/MCS: two commonly overlooked conditions that are often co-morbid to M.E.

Despite being an extremely common and disabling multi-systemic disease M.E. remains one of the most misunderstood, stigmatised and underfunded illnesses in the world today. So in honour of M.E. awareness day, I have compiled a list of facts the average person may not know about the disease:

  • M.E. is classified as a neurological disease by the world health organisation.
  • It affects an estimated quarter of a million people in the UK, 17 million worldwide making it twice as prevalent in the UK as MS and three times as prevalent as HIV or breast cancer.
  • M.E. affects both…

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Clarissa Shepherd’s Encouragement

Clarissa Shepherd

Clarissa Shepherd

I follow Clarissa Shepherd on Facebook.  She is a special person, adored by chronic illness sufferers; also a favorite of advocates – of which I am one, since my daughter lives with her invisible chronic illness on a minute to minute basis.

decision 4

Clarissa suffers from (and with) more than one chronic illness; and yet, she is a staunch fighter on her own personal level, and also a supporter of all those who live daily with their symptoms and the social stigma associated with their diseases.  Clarissa covers just about every symptom and reasons why and suggests how to deal with it all.  She shares herself totally, and gladly does so, in order to help anyone suffering with the challenges chronic illness can throw at a patient.

decision

The following is a recent post Clarissa shared with everyone who follows her on her public Facebook page, and I felt impelled to share it with all my followers on WordPress.  In my humble opinion, it considers not only those who deal with the daily challenges of chronic illness, but also those of us who do not – just dealing with life in general can be a great challenge to many.

Allow Your Spirit To Soar

Those of us surviving chronic illness walk a very different road [from] most. Functioning, while living with pain, exhaustion, brain fog, sensory overload and more. Then add in the loneliness, isolation, anxiety and depression and you find yourself overwhelmed by it all. It’s not only about where we are today, but about how long we’ve been here. Unlike some illness, when we speak of ours, it’s in terms of years, not days or weeks. We all suffer the loss of things undone, lives not lived, events missed, and the days yet to come. Being misunderstood by society, friends, and family, can lead to a place of despair.

However, it’s in the place of sadness and darkness that you find your true strength. You learn to flourish, even in your pain. You find new and creative ways to live. You appreciate the simple things of life that most people take for granted. In order to survive chronic illness, we must shift our thinking, concerning what productive, now means to us. Your limitations are, just that, limitations. We need not allow other people, nor society, to define us or impose their ideas of self-worth onto us.

You are a vital human being. This illness is not of your own making. It’s not who you are. It’s just where you are. You show your strength and courage with each breath you take, every obstacle you overcome, each time you learn new ways to cope. You are fearless, even in your pain.

When you hear those voices of defeat speaking to you, tell yourself that you’re not defeated by this. You’re only learning to maneuver on a different path. Realizing this is empowering. Know you’re courageous, even when you don’t feel you are. Know you’re strong, even when you don’t feel you are. Know that living life, in a different way, is not giving in or giving up. It’s regaining power, that was already within you. You’ve grown and flourished despite, chronic illness. You show your bravery, by staring illness in the face, moving through it each and every day, with grace and perseverance. We walk this journey together. A kinship, of the heart. A combination of many different people from many different backgrounds, yet one in spirit. There is strength in numbers and for us, knowledge is power. Be kind to yourself. Respect who you are. Love the person that you’ve grown to be.

My wish for you, is that you will see this in yourself. That you’ll bask in this truth and that this truth will rest on you, settle in you, and allow your spirit to soar.

Clarissa Shepherd

invisible illness

[Clarissa’s image from Facebook]

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