I have become home/bedbound with M.E. (Myalgic Encelphalomyelitis), which is why my blogging has all but disappeared. When my energy allows, I have been writing a new entry bit-by-bit with the hope of getting it online soon. In the meantime, I must reblog this important entry by Sunshinebright about the MillionsMissing Project. I did manage to tweet in support on May 25th, so I feel good about participating in my own small way. Many thanks to all who made the Project a successful protest. Now the test is to see where we go from here: did the people we needed to reach listen? Time, and possibly continueing the MillionsMissing Mission, will tell…
Solve ME/CFS Initiative President Carol Head said that following last year’s Institute of Medicine report, there is no reason for the federal government to drag its feet on aggressively funding research on the disease.
“It is the role of NIH and CDC to care for the health of their citizens, and the health of those citizens is currently being funded by ourselves for ourselves,” Head said.
The protest included a series of demonstrations by ME/CFS patients and their loved ones at locations around the country and across the world, including: Washington, D.C., San Francisco, Philadelphia, London, Melbourne, Seattle, Atlanta, Boston, Dallas, Raleigh, Canada, the Netherlands and Belfast. Protesters in D.C. assembled outside the Department of Health and Human Services (HHS) headquarters. Other U.S. protesters assembled outside the regional HHS offices.
The shoes represent the active lives lost by the owners…
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I have given this link to my daughter, as she was just stating today that she thinks she may have ME also. It may just be the Autism. We have noted several times that both she and I share certain “traits” in our illnesses. This may explain why.
I follow “Onward Through the Fog,” a blog on blogspot, authored by Erica Verrillo, a talented person who suffers from ME (Myalgic Encephalomyelitis). Her reports and research are top notch.
In this particular posting, Erica reports on the similarity of some findings affecting Autism and ME/CFS. These findings have to do with brain inflammation.
A John Hopkins study acts as confirmation that excitotoxicity caused by chronic inflammation is central to autism.
As someone with ME, and as someone with a daughter on the Autism Spectrum, this discovery is one of the most important medical events in recent history. Times are changing and researchers are finally picking up the pace studying neuro-immune issues. As my ME progresses, the hope for better understanding of the disease and better treatments may see fruition. Many with ME, MS, and Autism, to mention some of the many misunderstood neuro-immune diseases suffered by millions, might see a flicker at the end of the tunnel.
“They’ll have to change the textbooks.” This statement, by Kevin Lee, PhD, Chairman of the UVA Department of Neuroscience, is the result of a study at the University of Virginia School of Medicine. The study, awarded to the UVA Health System and funded by the National Institutes of Health (NIH), has shown there are heretofore undetected lymphatic vessels connecting the brain to the immune system.
Researchers knew there was a connection between the brain and immune system, but the vessels were completely hidden. Now, there are many new angles to exploring neurological disease.
This is a stunning discovery. It is difficult to explain how these vessels in the brain were overlooked when the lymphatic system was explored. New avenues of discovery are now possible and beneficiaries might be MS, Autism, Alzheimer’s and maybe even…
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With the optimism I felt upon hearing the outcome of the IOM report this week, it is sad to learn the report is being shut out in the UK.
While the ME community is absorbing the finer details of the recently published report by the US’s Institute of Medicine (IOM), the silence surrounding the IOM report in the UK media is almost deafening. Whatever one’s opinion regarding the finished product, this is a significant study produced by a major and respected United States organisation, part of the Unites States National Academies, concerning a disease that affects between 100,000 and 250,000 UK citizens. There has been extensive coverage in various media outlets in the US but reporting in the UK has been near to non-existent. Call me a cynic but had the IOM study concluded ME was a predominantly psychological condition and renamed it ‘Cannot be bothered to exercise syndrome’, I have no doubt, following heavy promotion by the Science Media Centre (SMC) and the likes of Wessely and White, the report would have been plastered all over the British…
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A young ME sufferer, made wise beyond his years, writes a poignant letter to King Harald of Norway.
Letter to King Harald of Norway from Martin and 58 other young people with M.E.
ME mum’s confessions proudly presents an important letter to King Harald from Martin (17). The letter is also signed by 58 other children and youngsters with M.E. (Norwegian original)
A shortened version of the letter was published in the leading Norwegian newspaper aftenposten.no and was also in the printed paper. In the paper, this was an important contribution to the ongoing debate on M.E. We recommend reading the full version. Both the letter and the following quotes make a strong impression.
In addition to the letter, the King received all the senders’ names and how long they’ve been sick, a list of 47 quotes and 5 pages with photos of the young ones. We have chosen to remove personalia here. The original was sent to the royal castle December 7th
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Most of us are sitting around a table, sharing a festive meal with family and friends, enjoying each others company.
Today, I am welcoming a friend into my home and into my family. For this, I am thankful. Thankful for being able to do this for a woman whom I consider a sister and who has been there for me many a time. Thankful that, while I can help her, she is willing to help me as well. Thankful that she understands my illness and treats me the same as she always has – with love and respect.
Today, I give thanks for all of the understanding, love and support I receive from my family. The road I travel would be a lot more difficult without it.
Today, I give thanks to the people with ME/CFS, who are using the little bit of energy they have, and their supporters, to advocate for this invisible illness. Together we are fighting an uphill battle – one that has been made necessary by neglect and abuse from the medical community. I am thankful that I have enough energy to join the fight.
In fact, everyday I am thankful for all of the above and more.
Thank you for reading this blog!
A poster – with a Dalek!
Get me a Dalek! 😀
Getting much needed attention to the plight of ME sufferers, and the issue of it being a physiological illness, has been an uphill battle. Julie Rehmeyer has written a first-person article that should get a lot of conversations started. (At least we can hope!) Please click on “Washington Post” to link to the article.
Rehmeyer is a math and science writer in Santa Fe, N.M. A version of this article appeared originally at the science writers’ blog The Last Word on Nothing.
Since the last time I blogged about myself, a lot of things have happened. I have been introduced to many new doctors and a few new tests. Thanks to Dr. Vera at NOVA, I am on some new medicines for ME and Fibromyalgia (which have practically gotten rid of my brain fog!) We are still experimenting with dosages to see if more improvement will be possible. (Fingers crossed!)
A dear friend who needs a place to stay will be moving in shortly. Lots of planning and packing going on between the two of us. Living in Florida will take some getting used to on her part. It took me two years to feel like I belonged here.
She will be arriving on Thanksgiving. The holidays will be particularly meaningful as we share the joy of being a family, as I consider her a sister. Very excited! (Also, can’t wait for her to see my jewelry studio!)
And speaking of jewelry…I have been keeping myself busy, designing and repairing pieces on commission. Here are pictures of some of my work…
New pair of earrings made to replace old earring with missing partner. Used Swarovski crystal, freshwater pearls and gold-filled chain.
Necklace made for opal and blue topaz pendant, supplied by client. My plan was to honor the pendant, not overwhelm it. Used agate, sterling silver beads, Japanese seed beads and Swarovski crystals. The client was trilled with the results and has ordered earrings to match.
More pictures to come in the future.
As for my Kraftycat Creations Website, I am in the process of revamping – adding new, exciting products! This is a wonderful part of my life. I consider it therapy for a happier, healthier Fern. The “new and improved” Kraftycat Jewelry and Creations will be ready to view shortly.