Often Bedridden For 25 Years, Advocate Welcomes NIH Move On Fatigue Syndrome

Writer Rivka Solomon, who has Myalgic Encephalitis -- also known as chronic fatigue syndrome -- protests federal inaction in Washington, D.C. (Courtesy)

Writer Rivka Solomon, who has myalgic encephalomyelitis — also known as chronic fatigue syndrome — protests federal inaction in Washington, D.C. (Courtesy)

By Rivka Solomon
Guest Contributor

Last week, the National Institutes of Health announced a welcome change: They promised to help the more than 1 million Americans who have the devastating disease commonly known as chronic fatigue syndrome.

This is akin to the NIH finally recognizing multiple sclerosis or Parkinson’s disease, two other debilitating neurological illnesses that also have no known cause or cure.

The name chronic fatigue syndrome, which trivializes the true horrors of the disease, was adopted by the government decades ago and has been truly detrimental to the patients. The stigmatizing name has allowed doctors, the media and even families whose loved ones got sick to dismiss patients as mere lazy malingerers.

After all, who isn’t fatigued in today’s hustle and bustle world? Take a nap. Get over it. Exercise it away.

Well, I tried. But napping didn’t help, and exercise made me significantly sicker.

So for the last 25 years in which I have had myalgic encephalomyelitis, or ME — the name the World Health Organization uses and the name most patients prefer — I have been forced to spend much of my life in or near bed.

Try doing that for a quarter of a century.

Myalgic encephalomyelitis means, literally, pain and inflammation of the brain and spinal cord. But what does that translate to in the real world? I often struggle with exhaustion so crushing it is hard to get to the bathroom, let alone lift my arms to shampoo my hair; brain fog so thick that formulating and finishing thoughts is a struggle; vertigo that makes it hard to see or stand up straight; numb hands; Jello-like legs; joint and muscle pain; and a hyper sensitivity to chemicals and perfumes that turns me into a canary in the coal mine.

The hallmark of the disease, though, is the inability to exert any energy — physical or intellectual — without a relapse or flare of unknown length. Sometimes it can take days or weeks to regain my strength after a phone conversation. It is as if my body can’t replace the cellular energy required to do, well, just about anything.

All this came on after mono. That was all it took. Mononucleosis. Other patients have gotten myalgic encephalomyelitis/chronic fatigue syndrome — abbreviated as ME/CFS — from other assaults that apparently slapped down their immune systems, too, and/or triggered an autoimmune response. The result? With no commonly accepted diagnosis and no FDA-approved treatments, many of us have been languishing for years.

Then, in 2014 and 2015, the NIH sponsored two initiatives: a report generated by the Pathways to Prevention program and a report from the prestigious Institute of Medicine. Between the two, they found ME/CFS was a serious disease that can significantly impair the lives of those who get it. They also found that research into ME/CFS was seriously underfunded and there is an urgent need to invest in it.

How true.

For years, the NIH has been allocating a pittance to ME/CFS research. This is most strikingly seen when compared to other neuro-immune diseases. Multiple sclerosis, with 400,000 U.S. patients, gets funded $102 million per year. ME/CFS, with more than 1 million U.S. patients, gets a paltry $5 million per year. The NIH gives more money to research on hay fever than ME/CFS. And yet people with hay fever don’t spend decades in bed, too weak to function.

The question is why? Continue reading

NIH Grants $10M To Help Erase Research Gender Gap, But Is It Enough?

The National Institutes of Health this morning announced it will distribute more than $10 million in grants to help combat a persistent pattern of gender bias in science and medical research. The New York Times reports:

The researchers will use the additional funds to include more human participants — generally women — in clinical trials and to ensure that their laboratory animals, even cell lines, are representative of both genders. The money also will be used to analyze gender differences in the resulting data, officials said.

Dr. Paula Johnson (courtesy)

Dr. Paula Johnson (courtesy)

But a key advocate on the topic, Dr. Paula Johnson, Chief of the Division of Women’s Health at Brigham & Women’s Hospital, and Executive Director for the Connors Center for Women’s Health and Gender Biology, says this grant represents just a tiny step forward. In this opinion piece, Johnson details some of the critical work still needed order to level the medical research playing field:

Today, the National Institutes of Health (NIH) took a significant step towards improving the health of women by announcing $10.1 million in grants to fund sex-specific medical research. The new funding will allow researchers to better understand the impact sex differences have on disease and thereby more accurately detect and treat illnesses from depression and drug addiction to lung cancer and Alzheimer’s disease.

This latest development is welcome news in a recent series of advancements being made to address the sex and gender inequities that persist in biomedical research.

But despite this progress, the evidence of gender disparities in biomedical research, and the impact they have on the health of both women and men, are so remarkable, it is surprising that the problem has not yet been adequately addressed.

Despite the passage of the historic 1993 NIH Revitalization Act that mandated the inclusion of women and minorities in NIH-funded clinical trials, women are still underrepresented; male mice (and other animals) are still predominant in disease studies; the sex of stem cells are not routinely considered in this promising area of research, and research results are still not consistently analyzed and reported by sex. Even more disturbing is that, in light of these facts, women are disproportionately impacted by a number of diseases including Alzheimer’s disease, some forms of lung cancer found in non-smoking women, depression and aspects of cardiovascular disease.

When we lack sex-specific research, we don’t know why. Continue reading

MGH Braces For Millions In Research Cuts

WBUR’s Curt Nickisch reports that Massachusetts General Hospital is budgeting for a $19 million cut next year due to decreases in federal research funding: 

MGH President Peter Slavin says the projected loss of $19 million is only part of it — that’s the amount that goes to the hospital to help pay overhead. Slavin says the National Institutes of Health has also been telling researchers to lower their maximum salaries, and warning that fewer grants will get the green light.

“Some young people who might have considered careers in biomedical research are just going to see this incredibly steep hill, and decide to do other things,” Slavin said. “That is tragic.”


Mass General’s annual research budget is about $800 million.

Last week WBUR reported on further sequester-related research cuts and how they might undermine basic science — and, specifically, Boston’s biomedical edge — in the future: Continue reading

‘Scientists At Risk’: Cuts Threaten Boston’s Biomed Research Edge

“Abundance” has always been a choice word in describing the volume of federal funds fueling biomedical research in Boston. However, local researchers won’t be spared from the effects of sequestration, the automatic budget cuts that became law in January.

Federal cuts include National Institutes of Health research grants that have been a central source of funding for biomedical research efforts across the country.  Boston, as a top recipient of the NIH’s largesse, will be hit particularly hard.

National Cancer Institute/Wikimedia Commons

National Cancer Institute/Wikimedia Commons

WBUR’s Bruce Gellerman spoke with Dr. Piyush Gupta, a researcher at MIT’s Whitehead Institute for Biomedical Research in Cambridge about the NIH cuts:

More than 30,000 people in Massachusetts work directly in biomedical research. Gupta says that’s due, in large part, to the grants researchers here get from the National Institutes of Health.

“The NIH is the source of funding that sustains laboratory research — the primary source of funding throughout the country,” he said.

For 18 consecutive years, Boston has led the nation among all U.S. cities in the amount of funding from the NIH. Money for biomedical research here last year reached a near record. But the federal sequester calls for cutting the NIH budget by 5 percent, and more over the coming decade.

Massachusetts got $2.3 billion from the NIH last year. That works out to $377 per person. California was a distant second, with $90 per person. And if you look at just Cambridge and Boston, it’s a whopping $3,000 a person.

Veteran biomedical researchers like Dr. Gupta fear that the growing scarcity in federal funds will lead to a more competitive environment and quash the collaborative ethos that currently exists. Continue reading

Globe: Impending Federal Cuts Would Hurt Boston Researchers

The headline sounds a little Halloweeny — “Threat to funds haunts Boston-area labs” — but there’s nothing festive about the frightening prospect described in today’s Globe story. Reporter Rob Weisman writes:

Boston-area teaching hospitals and universities are bracing for deep cuts in the federal funding that has fueled biomedical research for decades, raising fears that breakthrough work on cancer cures, stem cells, gene therapy, and other research will suffer setbacks.

Unless Congress agrees by Dec. 31 on $1.2 trillion in savings to reduce the federal deficit, National Institutes of Health spending will be trimmed by 8.2 percent, or about $2.5 billion annually, according to the Office of Management and Budget projections — part of an across-the-board budget-chopping process known as sequestration.

If that happens, hundreds of jobs and scores of grant proposals at Massachusetts labs could be lost. Some labs are already reassessing staff levels, and scientists worry they might not be able to proceed with crucial studies of serious diseases such as lung cancer and Alzheimer’s.

Frankly, I’ve never been able to get over my bafflement at the hand-to-mouth nature of jobs in science — the fact that the dependence on grants means that even some of our most brilliant scientists are often left wondering whether they’ll still be able to work on their promising projects in a year or two.

And though the NIH budget has technically been flat for the last few years, I’ve already been hearing quite a bit about ever-harder-to-get grants and the damage to delicate laboratory social ecosystems that build up over many years — and can be destroyed with a single committee’s “no.”

Massachusetts, as Rob points out, gets more NIH money per capita than any other state, and stands to lose between $200 and $300 million next year. I imagine office windows going dark from Kendall Square to the Longwood Medical Area. Or am I over-reacting to the usual anti-cut lobbying? Readers, thoughts?

Debt Deal Could Mean NIH Research In MA Hit Hard

WBUR's Deborah Becker

WBUR’s Deborah Becker reports:

Massachusetts receives more federal scientific research money per capita than any other state in the country — most of it from the National Institutes of Health, or NIH. Susan Windham-Bannister, president and CEO of the Massachusetts Life Sciences Center, says the state will likely be hard hit.

“When we look at dollars for major research programs and these dollars come from NIH, for example, it is likely that Massachusetts will experience a disproportionately negative share, because we have received a disproportionately positive benefit,” Windham-Bannister said.

Last year, the state received $2.4 billion from NIH for research. About half of that went to the teaching hospitals.

The five largest teaching hospital recipients of federal research dollars are in Boston, according to John Erwin, the executive director of the Conference of Boston Teaching hospitals. They include Massachusetts General Hospital, Brigham and Women’s, Children’s Hospital, the Dana Farber Cancer Institute and Beth Israel Deaconess Medical Center.

“That’s something we should be proud of,” Erwin said. “It shows that our researchers are putting forth proposals that, after peer review at NIH, are getting funding and it’s anchoring the entire life sciences industry here in Massachusetts.”

Massachusetts receives more federal scientific research money per capita than any other state in the country.
In fiscal year 2007, Erwin said, NIH-funded research created more than 20,000 new jobs in Massachusetts, with wages totaling more than $1 billion.

See the full report on here.

Rock Stars Of Brain Science Gather In Boston

I was remarking upon the truly astonishing line-up of luminaries attending Rep. Patrick Kennedy’s major brain conference in Boston today, launching an initiative that aims to take on the brain as a challenge on the scale of JFK’s drive to the moon 50 years ago. “It’s just about everybody who’s anybody,” I said — all the names of federal agency leaders and high-profile scientists I’d covered for years on the brain beat.

Yes, said another attendee, “They really brought out all the rock stars of brain science.”

So call me a groupie, but I homed in on one particular scientist whose work I’ve admired from afar but never covered: Dr. Karl Deisseroth of Stanford. He leads work that many see as a real game-changer in brain science. His best summary: “The combination of genetics and optics to achieve gain and loss of function.” My best simplification: You engineer neurons so that, say, green light turns them on, red light turns them off. Green light: scared. Red light: Not scared any more.

Here’s Karl kindly obliging with sound bites:

Many at the Kennedy conference have noted that the brain is frustratingly hard to experiment on, stuck as it is inside the skull and endlessly complex. Optogenetics lets us effectively turn things in the brain off and on, to test hypotheses, figure out how ciruits work and someday, perhaps, fix them.

Actually, for mice, that day may already have come. Karl Deisseroth’s team showed this spring that they could apparently reduce the anxiety of a mouse by manipulating it optogenetically. The Times reported earlier this month:

Treating anxiety no longer requires years of pills or psychotherapy. At least, not for a certain set of bioengineered mice. In a study recently published in the journal Nature, a team of neuroscientists turned these high-strung prey into bold explorers with the flip of a switch. The group, led by Dr. Karl Deisseroth, a psychiatrist and researcher at Stanford, employed an emerging technology called optogenetics to control electrical activity in a few carefully selected neurons.
First they engineered these neurons to be sensitive to light. Then, using implanted optical fibers, they flashed blue light on a specific neural pathway in the amygdala, a brain region involved in processing emotions.
And the mice, which had been keeping to the sides of their enclosure, scampered freely across an open space.

Obligatory disclaimer: Manipulating circuits in mice is a long way from doing it in humans. Continue reading

HIV/AIDS In The U.S. 'Worse Than Most Perceive'

More than 1 million people live with it in the U.S., and one in five don’t know they have it. While the annual numbers of new HIV infections have remained stable, more than 56,000 Americans are newly infected with the virus each year, according to the Centers for Disease Control.

In a recent survey, more than 60 percent of Americans said advancements in HIV/AIDS have received too little coverage. I spoke with an infectious disease doctor and expert to find out where we stand in combating HIV/AIDS. Dr. Anthony Fauci is the director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health.

What is the state of HIV/AIDS in the U.S. today?

Dr. Anthony Fauci: The state of HIV/AIDS in the United States is clearly worse than I believe most people perceive, because we’ve reached somewhat of a plateau — but at an unacceptable level — and there has been a degree of complacency about that.

I believe the perception of HIV/AIDS in the general population, is [that people don’t] perceive it as serious a situation as it is. The people who are involved with it every day, like I and my colleagues are, we see that right up front, just looking us square in the face. But for the ordinary person who has so many other things on their mind, they’re really not thinking about this as a big problem in the United States, when in fact it still is.

What is being done in terms of funding and outreach for HIV/AIDS?

There’s always a need for robust funding for HIV/AIDS research, but there have been enough major advances, particularly in the arena of therapy, where we really need to implement the things that we have done, as much as, or more than, getting new things.

This is really a low-tech public health/sociological issue, where you’ve got to get into the population, particularly people at risk, and you need to seek them out in a voluntary way, get them tested and get them into care. Continue reading

Collins, A Fervent Christian, At Center Of Stem-Cell Debate

Francis Collins, director of the NIH

There’s a great profile of Francis Collins — director of the National Institutes of Health and true-believing Christian in a sea of atheist scientists — in this week’s New Yorker. Writer Peter Boyer asks the question: How does a man who, while hiking, sees a frozen waterfall formed into three separate parts and takes it to be “a revelation of the Trinitarian truth,” also take on the role of chief cheerleader for embryonic stem-cell research?

The answer, it seems, is that while Collins is “personally torn by ethical questions posed by stem-cell research,” Boyer writes, he “also feels it is morally wasteful not to take advantage of the hundreds of thousands of embryos created for in-vitro fertilization that ultimately are disposed of anyway. These embryos are doomed, but they can help aid disease research.”