Solve ME/CFS Initiative Takes Part in #MillionsMissing Protest

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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…

Sunshinebright

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.

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Millions Missing demonstration in Washington, DC.  (Photo by Mary F. Calvert) #MillionsMissing demonstration in Washington, DC. (Photo by Mary F. Calvert)

The shoes represent the active lives lost by the owners…

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Body Image Experiment

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For many decades, the media has idealized their image of the “perfect woman”, going so far as to photo-shop pictures of models to inhuman proportions. Culture dictates that looks are important. The message comes across to females of all ages and shapes that they do not measure up. For many women, this expectation can damage their self-esteem.
In recent years, a backlash has been building against the media’s message, and rightly so. Many women, along with some men, are speaking out, their message being that beauty comes in all shapes and sizes. It is time for us to be comfortable in our own skin.
In the following video, presented by HLN, Amy Pence-Brown puts her message forth by stripping down to her underwear in the middle of an outdoor market. The response is heartwarming.

Brain Inflammation – Its Similarity In Autism and ME

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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.

Sunshinebright

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.
activated microglia
Excitotoxicity has been put forth as a mechanism of ME/CFS by a number of clinicians and researchers, including Drs. Paul Cheney, Jay Goldstein, Morris and Maes, Martin Pall, and, most recently, Jarred Younger.

 

 

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#ME Where Are We?

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A great question asked by Sunshinebright – #ME Where are we? A question I would like a great answer to.

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Alas, I am doomed to be disappointed. As Sunshine pointed out, 2015 started out with a lot of optimism. M.E. was officially declared a real, physical disease by the IOM. This was a big win, as an estimated two million sufferers in the U.S alone, including myself, have been treated horribly by the medical establishment. M.E. had never been taught in medical school and doctors typically would “poo-poo” the symptoms effecting M.E. patients. We have been labeled as hypochondriacs and being mentally ill. The outcome of the IOM’s report would surely change things for the better – this was the hope. More research dollars to find a biomarker and, hopefully, a treatment that works (if not a cure.)

The truth: Doctors still have no clue what M.E. is. Money for research is still not coming from the NIH. Just this month, Dr. Ian Lipkin , a researcher, resorted to eating hot peppers in a challenge to raise funds. Very sad.

Don't be surprised...

Sunshinebright

During the first half of this year, there was much going on in the Health and Human Service (HHS) Department and regarding ME (Myalgic Encephalomyelitis):  we had the IOM’s (Institute of Medicine) outstanding, positive report (in my opinion) and then there was the P2P (Pathways to Progress) report.  The former was indicative of forward movement in the cause of ME and the latter, was not.

We’ve been ignored.

There were stand-offs, delays, and hidden refusals when the FOIA was used to obtain documents vital to the ME cause.

And where are we?  After all the hullabaloo and interviews of patients including Laura Hillenbrand, author of “Seabiscuit,” Jen Brea, co-developer of a movie, “Canary in a Coal Mine,” I ask again:

Where are we?

It looked like we had some strong headway for a while, in getting ME recognized as a VERY SERIOUS disease (which it is of course), and…

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Important Brain-Immune System Link Discovery

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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.

Sunshinebright

“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.

Maps of the lymphatic system: old (left) and updated to reflect UVA's discovery. Maps of the lymphatic system: old (left) and updated to reflect UVA’s discovery.

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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These 5 Hero Moms Will Give You Extra Reason to Celebrate Mother’s Day

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  I consider my Mom a hero. The advocating for ME and Autism she does is amazing. She is the one person I can count on to show understanding and unconditional love to a daughter who’s road is rocked by chronic illness. All my love, Mom, today and always.

The following story is from “Time”

Written by  @tcberenson

From saving a drowning couple to rescuing kids from a bear

It’s true that every mother is a hero, which is why we have Mother’s Day. It’s just one small day of the year for people to appreciate everything mothers do for their families. But it’s also true that all acts of maternal heroism are not created equal. Dealing with the daily challenges of raising kids is one thing, but saving children from a bear is quite another. So here, in honor of Mother’s Day, we present five hero moms of the year.

  • The Mom Who Rescued Her Kids With a Pizza Hut Order

    Cheryl Treadway was being held hostage with her children in Florida and figured out how to escape — using an order from Pizza Hut.

With Treadway’s boyfriend holding her and her three children their home at knifepoint this week, Treadway ordered from Pizza Hut on her phone and asked, in the comments section, for someone to call 911.

Thanks to Treadway’s creative thinking, an employee at Pizza Hut called the police, who then rescued the family.

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  • That resolve ended up being life-saving when she saw a couple drowning off the coast of Cancun last December. There was no lifeguard on duty, so Loiselle, a single mother of two, dove in herself, swam out and brought the couple safely to shore.“Words cannot describe my gratitude but I’ll try,” the man said in an interview. “You saved my girlfriend’s life and most certainly mine too.”Calgary woman rescues, rescues couple, coast of Ca

    Tamara Loiselle and son, reading a letter of graditude from the couple.

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    • The Mom Who Got Her Family Out of a Burning House

      Morgan Stone, mother of five, had only seconds to spare to get her entire family out of their Indiana home before it was engulfed in flames last December.“It took me a second to really realize what was happening. When I opened the bedroom door and it was full of smoke, it took me a minute to grasp that this was a serious house fire,” Stone said.She sprang into action and got her five kids, her father-in-law and her pets out of the house before the whole structure burned.“He says I’m a hero,” Stone said of her fiancé, “But I don’t think I’m a hero, I’m just a mom who got my kids out safely—nothing means more to me than them.”

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      The Mom Who Saved Her Neighbor’s Kids From a Bear

Candace Gama saw her neighbor’s 6-year-old sons waiting for their school bus. Then she saw the bear.

Billings black bear (copy)

The black bear was about 20 yards away, so Gama drove her car between the bear and the kids and yelled at them to get in the car. Then to speed things up, she grabbed the boys by their backpacks and dragged them inside.

According to a local Montana newspaper, Gama’s 5-year-old daughter said her mom was the hero of the day.

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The Pregnant Mom Who Saved Her Family After a Terrible Car Crash

 

Erika Grow’s car hit black ice on the road in Wyoming last November and flipped three times, throwing her husband and sister from the car and leaving her two young children trapped in the back.

Even though she was eight months pregnant, Grow was able to clamber to the backseat and unbuckle her children, ages 3 and 21 months. She put them in suitcases to keep them warm in the freezing Wyoming weather.

Grow’s husband and sister went to the hospital, but her two children and unborn baby were unharmed.

Photo taken after birth of the newest Grow family member.

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Letter to the King

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A young ME sufferer, made wise beyond his years, writes a poignant letter to King Harald of Norway.

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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)

Photo: NTB Scanpix Photo: NTB Scanpix

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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Finally, Newspapers Are Starting to Publish the ME/CFS Story

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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.

Sunshinebright

Julie Rehmeyer’s article about her own experience with ME/CFS, originally, and specially written for the Washington Post, has been picked up by the Chicago Tribune.

Julie Rehmeyer, science and math writer and contributing writer at Discover Julie Rehmeyer, science and math writer and contributing writer at Discover

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.

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Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis

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There are millions of people in this world who suffer from Myalgic Encephalomyelitis. Many of them cannot leave their beds, as this chronic illness takes away the ability to function in the everyday world. Never heard of M.E.? Small wonder, as many in the medical and political communities refuse to believe in it or champion it.

My Story -Part I:

I have been “living the M.E. life” for over 20 years, with a big decline in my health the past two.

Initially, much of the first 15 years were spent with some interruption in my day-to-day lifestyle. I suffered migraines, fatigue, body aches and many of the other symptoms associated with M.E. There were times my body rebelled with a painful flare-up.

In the beginning, I would have long remission periods. These gradually became shorter and more infrequent, eventually stopping altogether.

I “doctor hopped” for years, receiving much abuse and incorrect treatment along the way. I never knew exactly what was going on until the correct diagnosis from a doctor whom I trusted about 4 years ago. The rheumatologist who gave me the diagnosis also stated that she could not help me and advised me to find a doctor who could. This, unfortunately, is like finding a needle in a haystack.

If you look up ME/CFS doctors in the United States (and the rest of the world), you will find a scattering of names. One name, Dr. Nancy Klimas, stood out to me. Her office was in South Florida and I lived in South Florida. Bingo!

Of course, that was too easy. Her clinic was not taking any new patients. It was suggested I try calling again in a few weeks. Weeks turned into years, with no change in the response I received.

In the meantime, I found another Rheumatologist who was very supportive, although she had no real knowledge of the illness. But we made a team, together trying to figure out what would work to help my multiplying symptoms. And we have made some progress.

The biggest issue facing me was a way to keep my job – a necessity as I am the breadwinner for my autistic daughter and myself.

When it got to the point that brain fog was impacting on even the smallest task, my doctor came up with using Adderall to stay focused. It turned out to be the difference between not being able to put two words together (never mind remembering how to spell them) and being able to manage doing my job., (Albeit much slower than before, as I need to concentrate harder and check my work at least two times for any errors.) We also found a mix of meds to somewhat diminish the increased pain, spasms and twitching I am now dealing with.

Good news came in February, when it was announced the Neuro-Immune Institute in Miami (which Dr. Klimas started) was adding new clinicians. I called and my name was put on a waiting list. After waiting what seemed like a long three months, they contacted me. The excitement and relief I felt at getting an appointment with Dr. Vera-Nunoz was palatable. It felt like winning the lottery.

To be continued…

 

From Phoenix Rising:

Andrew Gladman brings coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients (names have been changed for the sake of privacy) …

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It leads to a loss of independence and leads to a life of a lot of uncertainty. I had worked for 10 years while ill, and am now trying to find my way in regards to supporting myself and applying for disability NOT via Social Security! My life is in limbo, but luckily I have had family to fall back onto to take me in.  –GG

 

How lonely it is. –Sean

 

I think the worst things are losing your sense of identity, having to rely on others for basic help, but mostly not being able to produce energy on demand like the rest of the world and feeling resentful/jealous/fearful and emotions that you don’t want to feel. You just want to be healthy and participate in life as you knew it, but you can’t. There are so many more “Worst parts” that I don’t really know where to even begin! –Gingergrrl43

That it is an excruciatingly painful living death.Min

 

What I would like the world to know about living with severe ME/CFS is that it comes with a lot of losses. The one that has the greatest impact on me personally is the loss of my dignity.

Suffering from a severe form of a chronic, debilitating disease for decades comes with many losses such as physical functionality, social activities, friends and even family members. It is painful and totally life altering. For me, specifically, I mourn my dignity.

Other devastating diseases come with the worldwide understanding of how impactful the disease really is. For example, in my community, when a woman recently was suffering with cancer, the community organized daily hot meals for her and her family as well as daily visits. She was being hailed as a hero for being so strong, dealing with such devastation.

I will never have the chance to be heroic.

When I first fell off the social grid, I received some phone calls to see how I was doing. After hearing that I suffered from Chronic Fatigue Syndrome, those calls quickly dwindled down. This is because there is no understanding of the seriousness and devastation of this disease. The handful of people who still do call, tell me to go out because it’s a nice sunny day … as if it is a choice that I can make. I have been advised countless times to go for counseling as if it is just a mood thing. As far as my community is concerned, I am perceived as one who has been in a deep depression for 11 years and has become a hermit by choice!

Even though I have been suffering physically for so long, it is this loss of dignity that has been the most painful for me. –Gabby: 59 year old wife, mother and grandmother. I have been ill and disabled from work with ME for 11 years, fluctuating between severely and moderately affected.

People need to know about LOSS …

It’s as if a pause button has been pushed and some-one has forgotten to re-start it. The lives we wanted to lead have been lost to us. Yet I have lost less than those who are severe.

They need to know about PAIN, and GRIEF, and the PAIN OF GRIEF, and the GRIEF OF PAIN.

For those who are severe, they are caught in an endless cycle from which there appears no escape.
And they need to know how to CARE – not by constantly talking about the illness, but by finding little ways to show caring. A card, a flower, an email or Tweet … something that doesn’t require much response but shows that the individual is not FORGOTTEN! –Keela Too, moderate ME/CFS

 

The message I would like people to hear is that this disease should be avoidable and curable. It isn’t and it could happen to you next.

For the past 30 years I’ve had a disease that has had little research funding and when it has been funded it has often been siphoned off into other areas or gone to the wrong team.

We patients have had no control over this. Something rotten exists in the government bodies that control funding and the independent agencies.

If money had been allocated to this disease and to the right people then I don’t think there would be severely affected people with ME. –ukxmrv

 

Dear healthy people with busy lives.

I’d like you to know that I did nothing to encourage this illness upon myself.

To be clear, I did not ask for, encourage, give in to a mental desire for, choose for the sake of attention seeking to be housebound and isolated unable to do much of anything.

If you believe ME is not real I can assure you your belief is in error and probably derived with very little effort at uncovering the facts.

Nothing would make me happier than to be able to contribute what talents and skills I possessed to my family and my community. –Snowdrop, slow onset ME that has been steadily worsening for the past 9 years or so although I had experienced less severe symptoms for decades prior.

 

The one thing I would like people to know about ME is there nothing you can do about it once you get it. Nobody is going to like me for saying this.

Yes you can take medications, supplements, attempt to keep your body and mind in a healthy place, pray, scream, go from doctor to doctor searching after that bit of knowledge or that latest study; but unless there is a real cure for this horrible illness your body will have to deal with it to the best of its ability.

If you can find something to keep your body strong, that is good but keep looking because our bodies needs change and you are only treating symptoms. Accept it and learn to live your life from your house, your chair, your bed.

I’ve had ME 26 years and, being a former expeditor, I’m the type that looks for answers; something can always be done. My conclusion is that without a true cure we might as well just accept this disease and live the best life we can.

Unless the globe realizes that this is zapping incredible talent and costing money that could bankrupt governments and that people in power can get this disease themselves, we will never solve this. –PNR2008

I would like the world to know that this can happen to anyone, at any time …

The public has been told by the media and by the medical profession (excluding some exceptional doctors and researchers who specialize in ME and are usually ostracized by their peers as a result) that ME is not real, not serious, and something that the weak-minded somehow choose to develop or lack the will power to snap out of.
As you read this, please don’t make the mistake of thinking that this could not happen to you. I never thought this would happen to me.

Please open your eyes and your minds to see our reality.

Please try to understand our loss.

Please don’t knock what you don’t understand. We would not do that to you.

ME has cost me my career, my social life, my hobbies, and friendships. I hope for a better life. You could support that hope for all of those with ME.-Daisybell

 

Dear world,

Just for one week only, stay in your bed, and crawl on the floor to go to the bathroom.

Then we’ll talk. –Dr.Patient, Severe ME sufferer

 

Severe ME is an endless private torture of unbearable physical symptoms. For me *holding on* to my life and enduring the unbearable symptoms was the hardest thing I have ever had to do in my life. I understand how people with ME take their lives. It takes everything you have to get through severe ME. I am truthfully scarred by it, mentally and spiritually.

I fear going back to severe, I’m not sure I could do it a second time. I have nothing left. I used every ounce of will I had the first time round. I rest all afternoon and evening – I still live mainly in my bedroom, in bed 12 years on.
My hope is that one day no one will ever have to endure severe ME ever again.Rosie26

 

With severe ME there are small margins, a huge risk of deterioration, and it makes medical treatment difficult due to side effects. Emergency care is a big risk, it’s not adjusted/adapted to severe ME and there’s very little acknowledgement of it among doctors and carers. –Lorene, 45 years old and I’ve had ME since childhood. Since age 25 it’s been moderate/severe and since two years ago it’s been severe, I’m bedbound/housebound.

ME doesn’t kill you, but it squeezes every drop of life from you. –Ecoclimber

 

ME is not only worse than you imagine, it is worse than you can imagine.-Forbin

I’d like  people to know of the abuses we withstand, particularly from the medical community. It’s not “misdiagnosis” or “under treatment”. It’s abuse due to overwhelming ignorance: ignorance which is inexcusable and CAN be corrected if enough people give a damn.

Short of lie detector tests in every medical office, I don’t know what we have to do in order that we be believed for our suffering. –SD Sue

ME is a disease like no other. We’re told for most disease that we need to strive and push ourselves to get fit and healthy once more. ME doesn’t abide by these rules. Over time you come to learn to live an uneasy truce with the disease, to no longer fight it and succumb at the worst times in the hopes of better days to come. Nothing else in my life has tested me this much and given such little ground in the process. –Andrew

 

This disease has wrecked my health, but it is society that has wrecked my life. The disease has confined me to the house, but a culture of cruelty has confined me to poverty and isolation. Illness stops me from growing food, while official gatekeepers tell me I don’t deserve any. Illness means I still feel cold under all the blankets, while public policy says I don’t need heat.

It wasn’t disease that physically and emotionally abandoned me, forced me into bankruptcy, sued to take my house, claimed I just need exercise and therapy, and constantly forces me to prove I’m poor and sick. It was people who did all that.

In the US and many other “civilized” societies it is a Crime Against Capitalists to be permanently sick. It’s acceptable to be sick for a week. After that, we’re depriving The Economy of a chance to exploit our labor and enrich Our Dear Leaders and their wealthy handlers.

This situation will not change until many, many more people, both sick and well, come to understand what modern social institutions are really about and who they serve. Here’s a hint: they aren’t here to serve working people.

The horrendous, barbaric treatment we receive is not unique to this illness, and the attitudes we experience will not change if the puzzle of ME is solved. Patients of the next mysterious, potentially expensive illness will have to go through this misery as well. AIDS patients were not the first group of sick people to be brutalized, insulted and ostracized, and we won’t be the last.

When a reporter asked Mahatma Gandhi what he thought of western civilization, his response was, “I think it would be a good idea”. –Jim, 58

 

If you haven’t suffered, you can’t understand the exhaustion and the frustration over the changes in your life, personality, circumstances. –Karen