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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Chronically fatigued? The UK media and the recently released IOM report

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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.

Utting-Wolff Spouts

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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Study: Smelling farts is good for your health

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So this is where the research money is going? (Although it could be a money-maker for some extra pocket money! Stock up on some beans folks!)
iStock

The next time someone at your office lets out a “silent but deadly” emission, maybe you should thank them. A new study at the University of Exeter suggests that smelling farts could prevent disease and even cancer.

The study, published in the Medicinal Chemistry Communicationsjournal, found that flatulence could be a key factor in treating diseases.

“Although hydrogen sulfide gas is well known as a pungent, foul-smelling gas in rotten eggs and flatulence, it is naturally produced in the body and could in fact be a healthcare hero with significant implications for future therapies for a variety of diseases,” Dr. Mark Wood, a professor at the University of Exeter, said in a statement.

While hydrogen sulfide gas is harmful in large doses, smelling it in small amounts could reduce the risk of cancer, strokes, heart attacks, arthritis, and dementia by preserving the body’s mitochondria. Dr. Matt Whiteman, a University of Exeter professor who worked on the study, said in a statement that researchers are even replicating the natural gas to reap its health benefits.

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Blood molecule predicts success of antidepressants

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People who begin antidepressant treatment must face a grueling wait of several weeks before they find out whether or not the drug will work for them. A new take on the causes of depression could lead to a blood test predicting who will be helped by medication – taking the guess work out of prescribing.

“A test would be a major advance as at the moment millions of people are treated with antidepressants that won’t have any effect,” says Gustavo Tureckiof McGill University in Montreal, Canada, who led the study.

The research centres on miRNAs, small molecules that have an important role in turning genes on and off in different parts of the body. MiRNAs have already been implicated in several brain disorders.

In the latest study, Turecki and his colleagues measured the levels of about 1000 miRNAs in the brains of people who had committed suicide. These were compared to levels in brains of people who had died from other causes. A molecule called miRNA-1202 was the most altered, being present at significantly lower levels in the brains of people who died from suicide.

Crucially, this molecule seems to damp down the activity of a gene involved in glutamate signalling in the brain. That’s significant because recent research has highlighted the importance of glutamate signalling in depression.

The McGill team found that miRNA-1202, unlike most other miRNAs, is produced exclusively in humans and other primates. “That suggests this miRNA is involved in cognition,” says Yogesh Dwivedi of the University of Alabama in Birmingham, who was not involved in the study.

Blood samples taken from people about to start treatment with citalopram, one of the most widely used SSRIs – a class of antidepressant – showed that those who subsequently improved in response to the drug had about half the levels of miRNA-1202 as those who failed to respond. This suggests that measuring levels of the molecule could predict whether the antidepressant will be effective.

The next step, says Turecki, is to see if it also predicts response to other types of antidepressants. Promisingly, another drug called imipramine, which belongs to the second main class of antidepressants, had similar effects on miRNA-1202 to citalopram, when applied to neurons grown in the lab.

“MiRNAs are a hot topic in psychiatry now,” says Dwivedi. “They could help us understand the neurobiology of depression.” Dwivedi cautioned, however, that each miRNA can affect many different genes, so its involvement in depression may not be clear-cut.

Cosmo Hallström of Imperial College London says, although the results need replicating, a test to predict response to drug treatment would be very helpful. He points out, however, that it would need to give fast results, as psychiatrists would not want to delay starting people with severe depression on drugs that could help them.

Journal reference: Nature Medicine, DOI: 10.1038/nm.3582

The ME/CFS Day Fifty Million Dollar ME/CFS Research Funding Push – Pt. I

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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!

Fern 🙂

 

Reblogged from Health Rising

                       By Cort Johnson 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.

penny jar

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.”

cart with money in it

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.

scrooge

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 ben.gutman@mail.house.gov. 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!

Then say (write) “I’m going to call you (write) back in 2-3 weeks to follow-up, is that OK?” to confirm sign or not signed. Get a paper copy of the signed letter if possible. If they did not sign, remember to ask why and post the reason along with the Rep.’s name.

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 (SunnyvaleCupertinoSanta ClaraFremontNewark, 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)

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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.

 

Sincerely,

 

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/

 

Mental Health and ME, Part One: ‘All in the Mind’

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Thoughts on the Mental Health and ME misconception.

Dead Men Don't Snore

One of the most common misconceptions regarding ME is the idea that it is psychosomatic. This assumption stems in part from the fact that there is as yet no universally reliable diagnostic test, so it is often diagnosed on the basis of self-reported symptoms following the exclusion of other possible explanations. The problem is compounded by a large and very vocal group of psychiatrists who dismiss biomedical evidence of a physical cause of ME in favour of bio-psychosocial theories, claiming that ME is a form of personality disorder characterised by depression, exercise phobia and false illness beliefs.

Despite official recognition that ME is a neurological disease, the treatments sanctioned on the NHS (anti-depressants, graded exercise and behavioural therapies) have a primarily psychiatric focus, thereby reinforcing the perception that ME symptoms must be ‘all in the mind’. What little money the government spends on research into ME (far less than for…

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