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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Just to get your minds off “The Donald” and all the usual political stuff… I present an update on McCubbins (see my previous blog “Meow is the Time…” )
Meet Deez Nuts -a high school boy in Iowa named Brady Olson. He is sharing his ticket with Limberbutt.
From USA Today
Unconventional presidential hopeful Limberbutt McCubbins is throwing his tail in the race. He is 36 cat years old and, if elected, he would be the first neutered president (this could be a good thing.)
A great question asked by Sunshinebright – #ME Where are we? A question I would like a great answer to.
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.
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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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!
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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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) …
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
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
This is a powerful video.
Can this be good news for future research of ME? I certainly hope so and will be sending my congressman a note on this! Please join me in this effort.
– Thank you!
Reblogged from Health Rising
By on May 11, 2014
“Never before in our 20+ years have we seen such advances in research” IACFS/ME Board
Funding went up a bit last year for Chronic Fatigue Syndrome at the NIH but only big money is going to the move the needle on your health. Two efforts are underway to add $50 million dollars to ME/CFS research at the NIH over five years. That would triple funding for this disease.
Why focus on Congress and the NIH? Because Congress is the ONLY way to bring big money to this disorder. That’s what Dr. Lipkin said – and he would know – he tried to get funding and failed. If he can’t get it, then who can?
The definition of insanity is doing the same thing over and over again and waiting for a different result. We should give up hope that the NIH is going to turn itself around. They had a prime opportunity to provide a big grant for ME/CFS with the State of the Knowledge Workshop and failed. They’re spending less money on ME/CFS adjusted for inflation than they did twenty years ago. They need to be forced to pony up some money by the people who hold it’s purse strings – our Congressional representatives.
We have a good start.
Recently eleven Congressmen and women urged Director Collins of the NIH to follow the recommendations of NIH produced State of the Knowledge Workshop and his own federally appointed panel for ME/CFS (CFSAC) and provide a $7-10 million dollar ‘Request for Applications (RFA) for ME/CFS. (See the Congressional letter – Dr. Collins – March 2014 (1))
The IACFS/ME Association followed that up with a strong letter asking the NIH to provide a five-year RFA for $7-10 million that would more than double funding for this disorder. They stated
“We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments” for ME/CFS.”
RFA’s are the best funding mechanism the NIH has to offer. In contrast to the abysmally low level of grant applications the CFS grant review panel receives (@6 per session), RFA’s bring applications flooding in.
So far as I can tell, Chronic Fatigue Syndrome has had one RFA in it’s history; a $3 million RFA that followed the Neuroimmne Workshop in the early 2,000′s.
It wasn’t easy; it took several years and Senator Harry Reid smacking the NIH upside the head before they finally provided what ORWH director Vivian Pinn called ‘the smallest RFA’ possible, but that little RFA still made quite a difference, supporting work by Dr. Light, Dr. Fletcher, Dr. Baraniuk and Dr. Theoharides.
Now with signs that the federal government is beginning to ditch it’s Scooge-like approach to ME/CFS, it’s past time for an RFA. With International ME/CFS Awareness day tomorrow, let’s build on these efforts, force our way into the NIH’s piggybank, and finally get ME/CFS some real money.
We have the support of 11 congressmen and women to build off of. We have our professional ME/CFS organization stepping forward. Now it’s time for the ME/CFS patients to step up to the plate.
Support this effort by asking your Congressional Representative to sign onto the letter asking the NIH to triple research funding for ME/CFS. (See the Congressional letter here)
1) If your Congressional Rep. has signed the letter, contact them and THANK them for their support. Something as simple as “Thank your for your attention to and support of research into the medical condition myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).” They get little positive feedback so everything helps. Please thank Dr. Gutman for starting this at firstname.lastname@example.org. It’s extra good if you’re Rep. Lofgren’s constituent but even if you’re not, that counts as well.
2) If your Congressional Rep. has NOT signed, contact them and ask them to do so. Remember that peer pressure works on them as it does for other people. Seeing their colleagues sign helps.
Contact your member of Congress via phone, letter or email, tell them you are a constituent (i.e. you vote in their district), tell a bit of your story, why research is important to you, and ask the Congress person to read and considering signing both letters. Do not be put off by speaking to staff only and not the Congress person; staff are influential. Remember also, they work for you so don’t be shy!
Find Congressional members phone numbers and email contacts by going here.
The ME/CFS Champions Who Have Signed include:
- Anna Eshoo (Mountain View, Palo Alto, Saratoga, along the coast)
- Zoe Lofgren (most of San Jose)
- Mike Honda (Sunnyvale, Cupertino, Santa Clara, Fremont, Newark, North San Jose, and Milpitas)
- John Garamendi (Sacramento, Fairfield)
- Sheila Jackson Lee (Texas, Houston)
- Suzan Delbene (King County, Washington)
- Eric Swalwell (Los Gatos, Cupertino, San Jose parts)
- Scott Peters (San Diego, Poway)
- Daniel Lipinski (Chicago suburbs, Illinois)
- John Lewis (this is *the* John Lewis, the Civil Rights leader, from Atlanta, GA)
- Eleanor Holmes Norton (Washington, DC)
See what the IACFS/ME wrote below.
The IACFS/ME Letter
Dear Dr. Collins:
On behalf of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), we thank you for your attention to ME/CFS, and encourage the NIH to continue and strengthen research on this debilitating illness.
Last month, the IACFS/ME held its biennial research and clinical conference, attracting some 400 professionals and patients to discuss advances in biomedical and behavioral research on the diagnosis, pathophysiology, genetics, and treatments for ME/CFS. The overwhelming consensus from the attendees is that the research efforts, largely supported by NIH, are paying off. We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments. However, we need a special “push” at this time to solve the mysteries of this illness.
We call on you and Directors of key Institutes at NIH to collectively work together to issue a Request for Applications (RFA) calling for R01 and R21 projects related to ME/CFS. At a level of $7-10 million annually for five years, an RFA would double current funding and bring talented investigators into the field for the first time. The ME/CFS RFA would also dovetail nicely with ongoing NIH initiatives including those related to the brain, big data and transformative research.
We realize the substantial reductions in the NIH budget over the past decade have made it hard to issue RFAs. This is even more reason that we must focus our support on specific targets that are poised to make significant progress in the near future. With ME/CFS related to so many other medical diseases and conditions, support for research on ME/CFS will add to, for instance, our understanding of chronic pain, viral/ bacterial infections, sleep disorders, fatigue, autoimmunity, and cancer. In this regard, ME/CFS research already has aided knowledge of Gulf War Illness, fibromyalgia, retroviruses, and Lyme disease.
The Trans-NIH ME/CFS Research Working Group members have been helpful in coordinating awareness of the disease at the NIH. However, without financial support, their efforts to enhance applications to study ME/CFS are limited to oral encouragement. We all know that is not enough. The State of the Knowledge Workshop on ME/CFS in 2011 concluded that there is a need for interdisciplinary research, coordination of research, centralized data sharing, and recruitment of additional qualified investigators. The ME/CFS RFA could address those needs as well as the longstanding CFS Advisory Committee appeal for such an RFA.
The IACFS/ME is the largest professional organization in the world with a mission to promote, stimulate and coordinate the exchange of ideas related to ME/CFS and fibromyalgia research, patient care and treatment. Since 1990, IACFS/ME has been advocating for biomedical and behavioral research to develop ways to diagnose, prevent, and eventually cure this disease. Never before in our 20+ years have we seen such advances in research as what was reported at our recent conference. Bioinformatics, systems biology, high throughput technologies, and the microbiome provide new data and approaches to the study of ME/CFS. We are motivated with numerous possibilities, but troubled with the reality of underfunding to reach these goals.
We call on you with a united voice to set aside FY2015 funds at a level of $7-$10 million for an RFA on ME/CFS. Please let us know how we can help you make this happen.
IACFS/ME Board of Directors
- Fred Friedberg, Ph.D., President
- Kenneth Friedman, Ph.D.
- Lily Chu, M.D., M.S.
- Staci Stevens, M.A.
- Dennis Mangan, Ph.D.
- Rosamund Vallings, M.B., B.S.
- Sonya Marshall-Gradisnik, Ph.D.
- Julia Newton, M.D., Ph.D.
Tomorrow on Int. ME/CFS Day in Pt II of the Fifty Million Dollar Research Funding Campaign we acquaint the new Secretary of Health with ME/CFS! http://www.cortjohnson.org/