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.

seattlenetherlandscanada

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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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.

M.E/CFS awareness -

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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The Latest Update on Florida’s Medical Marijuana

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Medical Marijuana- finally legalized in Florida after tons of red tape (Republican red). But when will it be available? And for whom? One may never know. More on this by Sunshinebright!

Sunshinebright

medical

Medical marijuana has been one of the most contentious topics in the news these past couple of years.

State legislators can pass laws regarding “legalizing” this plant, but our federal government still considers it an illegal drug, and possession and/or use of it can still cause arrest, trials in court, and jail time for those persons caught in this illegal act by federal authorities.

In Florida, the legislature passed a bill in 2014, legalizing medical marijuana, in the hopes of avoiding a state constitutional amendment in the next election in 2016.  There are contents in the bill that caused a legal battle, setting back the activation of the new law.  (Please see my other posts about Florida medical marijuana here and here and here.)

Splashed over many headlines today, May 28th, 2015, is the announcement that Florida Administrative Hearings Judge Watkins, rejected claims by an Orange…

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She Gives Hope To Other ME/CFS Patients

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A little bit of hope goes a long way. And Carol E. Head is the picture of hope.

Sunshinebright

Below is a video Carol E. Head, President and CEO of Solve ME/CFS Initiative.

Carol E. Head, President and CEO of Solve ME/CFS Initiative Carol E. Head, President and CEO of Solve ME/CFS Initiative

She talks about her “personal walk” with ME/CFS, describing how she became afflicted with the illness.

She had goals and plans for her life when she was a young woman who had just graduated from Management School at Stanford University.

Then, she got the flu.  And you can guess what happened after that.

After going from doctor to doctor to doctor, she did seek alternative therapists, and, over the course of many years, started to see improvement, to the point where she was able to go back to work.

Her story, told briefly in this video, is reminiscent of most of all sufferers with M.E.

It’s not a long story, but you will be able to empathize with her, and take hope that it is possible…

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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) …

severeday

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

 

Compassion (and the lack of it) in the medical field

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Treated badly by a doctor? Just because they went to medical school does not mean you have to put up with their crappy attitude. Remember that, as a patient, you have the right to “fire” that idiot and find a true professional!

I have personally been through many bad doctors before finding the ones I now see on a regular basis – because they 1) know their stuff and 2) treat me with compassion and understanding.

I will always remember the neurologist I went to after getting Bells Palsy. My mother and I were shown into his office, where two chairs sat against the wall, several feet away from his desk. We pulled the chairs closer to the desk and sat waiting. The first thing this “doctor” did was yell at us for moving the chairs and made us put them back. He then went through an “examination” of me – without touching me and giving me looks of disgust (half of my face was drooping and paralyzed.) No treatment or medication was suggested and we were bluntly told to leave and make another appointment. My mother and I were in complete shock. I found another doctor to go to and put in a complaint to my insurance company.

That was almost 16 years ago and he is still practicing.

The following blog is another person’s trials and tribulations with a medical professional, very well written and definitely worth a read. Please enjoy her writing.

Important ME Research That You Should Be Aware Of

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Widespread neuroinflammation

Posted on 9 Apr 2014 by www.meresearch.org.uk


Transaxial slice of the brain taken with PET, by Jens Langner
There are good reasons for thinking that central nervous system pathology is important in ME/CFS, and some indications that inflammation of the brain (neuroinflammation) might be involved. However, proving the existence of neuroinflammation requires specific neuroimaging methods, and these had never been applied to ME/CFS patients – until Japanese researchers bit the bullet.

The team at Osaka City University in Japan, which has been studying ME/CFS for many years, have used PET imaging to try to obtain direct evidence of neuroinflammation. In essence, they measured the density of the ‘translocator protein’ (TSPO) produced when certain brain cells are activated – it’s the activation of these cells which indicates that inflammation is taking place. In this case, the brain cells were microglia (thought to be the main form of active immune defense in the central nervous system) and astrocytes (the most numerous brain cells, with functions including nutrient supply, repair, and nerve impulse transmission). The researchers recruited 9 people with ME/CFS (Fukuda 1994 and ME-ICC 2011 definitions) and 10 healthy controls, who underwent PET scanning involving the injection of a tracer followed by dynamic scanning over 60 min. Participants also completed questionnaires about symptoms, including fatigue, pain, and neurocognitive problems.

Their report in the Journal of Nuclear Medicine reveals that protein levels (indicating inflammation) were higher in ME/CFS patients than controls in “widespread brain regions”, including the cingulate cortex (199% higher), hippocampus (81%), thalamus (66%), midbrain (47%), and pons (45%). And, intriguingly, protein levels in some brain regions were significantly associated with the severity of particular symptoms; some of these associations were quite striking (despite the small number of patients), as in the correlation between protein level and cognitive impairment scores (r=0.94, p<0.0002).

The authors conclude that “neuroinflammation is present in widespread brain areas” in ME/CFS patients compared with healthy people. As they point out, this may be due to an immune response to an underlying infectious process, or possibly to over-activation of nerve cells (for whatever reason). There are two things to bear in mind, however. First, numbers are small (in essence, this is pilot data), and would need replication – one swallow doesn’t make a summer, and one scientific report does not convince, though it might fascinate. Second, protein levels were relatively low in absolute terms, raising intricate methodological issues associated with standardization in PET imaging. The authors are to explore this particular aspect in the next phase of their work on ME/CFS patients, an international collaboration study that will use a different, second-generation tracer and have a refined methodology.

If these dramatic and fascinating results can be reproduced, objective evidence of an inflammatory process in the brain of people with ME/CFS will become readily available for diagnostic and treatment-monitoring purposes, with enormous consequences for patients and their families.

CENTER FOR SOLUTIONS FOR ME/CFS

Research center at Columbia University, committed to understanding the pathogenesis of ME/CFS.

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