RFA Ticker, 6/20/16

tickerDid we get an RFA last week from NIH?

NOPE.

But DON’T WORRY. The NIH just awarded Dr. Fred Friedberg a four-year $1.5 million grant to study the hypothesis that push-crash cycles, daily hassles, and negative life events are associated with non-improvement and inactivity in ME/CFS patients. The long range goal? “[A] new self-management protocol that more clearly identifies non-improvement activities and how they can be changed.”

We’re doing FINE.

  • Total RFAs Issued by NIH: 246 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,114,716,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
6/20/16 1 $2,000,000 Zero
6/13/16 5 $21,475,000 Zero
6/6/16 5 $7,100,000 Zero
5/30/16 4 $6,900,000 Zero
5/23/16 8 $42,400,000 Zero
5/16/16 2 $7,800,000 Zero
5/9/16 11 $32,100,000 Zero
5/2/16 8 $32,485,000 Zero
4/25/16 4 $7,500,000 Zero
4/18/16 10 $42,230,000 Zero
4/18/16 10 $42,230,000 Zero
4/11/16 4 $6,825,000 Zero
4/4/16 8 $27,000,000 Zero
3/28/16 13 $161,000,000 Zero
3/21/16 1 $2,700,000 Zero
3/14/16 5 $23,650,000 Zero
3/7/16 9 $82,710,000 Zero
2/29/16 1 $1,890,000 Zero
2/22/16 9 $30,100,000 Zero
2/15/16 4 $26,500,000 Zero
2/8/16 5 $9,500,000 Zero
2/1/16 8 $26,000,000 Zero
1/25/16 4 $9,300,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 16 Comments

The Caffeine Disaster

IMG_4101I have a deep emotional bond with coffee. After I regained the ability to drink it without it tearing up my gut, coffee and I took our relationship to a new level. I switched to a Chemex, and found locally roasted beans. I developed a morning ritual around the brewing of coffee, and it became an essential prelude to each day. I even took the Chemex with me on a family vacation. But as with many good things in life, I didn’t know how much I needed it until it was gone.

Last year, I developed pelvic pain. I won’t bore you with the many rounds of appointments and theories spawned by the advent of this pain, but the working theory right now is interstitial cystitis. I know many ME/CFS patients who have it, so I wasn’t shocked.

That is, I wasn’t shocked until the doctor told me what the first-line treatment was: eliminate citrus, tomatoes, caffeine and spicy foods for three weeks to establish if they are pain triggers. Hold up. Caffeine? I don’t care about the rest of it, but no caffeine in any form for three weeks? Meaning no coffee, not even decaf? I was not happy at the prospect, but I sure did not like the amount of pain I was in, so I agreed to do it. I chronicled my distress on Twitter.

I was trying to be funny, but it was actually very difficult. I didn’t get caffeine withdrawal headaches or anything like that. But my cognitive function fell through the floor, as if someone had pulled the lever on a concealed trapdoor. I took two hour naps every day and when I was awake, I could barely do anything. I was miserable. My husband even begged me to go back on caffeine. Meanwhile, the pelvic pain improved at first and then reverted to its previous up and down pattern.

IMG_4299Determined to complete the experiment, I reintroduced caffeine to see if the pain increased, which would suggest there was at least some benefit to skipping caffeine. Nope. The pain maintained its pattern, despite my consumption of copious amounts of coffee.

But now I had a new problem. When my cognitive and physical function tanked after I gave up caffeine, one of my doctors prescribed a stimulant medication. Now when I drink the same amount of coffee as before, I feel like I have overindulged in caffeine. The stimulant medication plus a large strong coffee is too much, and I feel jittery and uncomfortable.

All this goes to show that tinkering with routine has to be done carefully. I had no idea how much I had relied on caffeine to function. One doctor said drop it, another doctor offered a drug to compensate, and then reintroducing caffeine made me feel lousy.

After more than two months of experimentation, I think I’ve found the sweet spot. I take the stimulant medication, and I can have a smaller, weaker coffee but still feel ok. My brain is back online, and I can enjoy my coffee ritual.

And the pain that started all this in the first place? Yep, still there in basically the same pattern. We’ve moved on to another first-line treatment – physical therapy – but that doesn’t seem to be helping much either.

Life with ME/CFS is an ongoing series of experiments, of tweaking one thing and then needing to tweak more things in response. I don’t recommend attempting it without caffeine.

Posted in Occupying | Tagged , , , , , , | 24 Comments

RFA Ticker, 6/20/16

tickerAnother week, another $20,000,000+ in RFAs, and nothing for ME/CFS. It’s an unfortunate routine.

But it bears repeating that we have an opportunity to speak up, and tell NIH what priorities should be the focus of future ME/CFS research. The deadline for response is June 24th, and I offer some ideas and inspiration in this post.

  • Total RFAs Issued by NIH: 245 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,114,715,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
6/13/16 5 $21,475,000 Zero
6/6/16 5 $7,100,000 Zero
5/30/16 4 $6,900,000 Zero
5/23/16 8 $42,400,000 Zero
5/16/16 2 $7,800,000 Zero
5/9/16 11 $32,100,000 Zero
5/2/16 8 $32,485,000 Zero
4/25/16 4 $7,500,000 Zero
4/18/16 10 $42,230,000 Zero
4/18/16 10 $42,230,000 Zero
4/11/16 4 $6,825,000 Zero
4/4/16 8 $27,000,000 Zero
3/28/16 13 $161,000,000 Zero
3/21/16 1 $2,700,000 Zero
3/14/16 5 $23,650,000 Zero
3/7/16 9 $82,710,000 Zero
2/29/16 1 $1,890,000 Zero
2/22/16 9 $30,100,000 Zero
2/15/16 4 $26,500,000 Zero
2/8/16 5 $9,500,000 Zero
2/1/16 8 $26,000,000 Zero
1/25/16 4 $9,300,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 4 Comments

Responding to the NIH RFI

For the first time, NIH has requested public input into the future direction of ME/CFS research. This is a chance for researchers, organizations, advocates, and others to provide input directly to the Trans-NIH ME/CFS Working Group on the following questions:

  • Emerging needs and opportunities that should be considered as new ME/CFS research strategies are developed.
  • Challenges or barriers to progress in research on ME/CFS.
  • Gaps and opportunities across the research continuum from basic through clinical studies.

The deadline for response is June 24th, and responses to the RFI must be submitted via email to MECFSRFI@mail.nih.gov.

I sincerely hope that many experts will submit their input, and that the input will be specific and constructive. A general call for more funding does not get at the questions NIH has asked, although it is obviously part of the answer. I am awaiting confirmation from NIH about whether they will make responses publicly available after submission.

I’m working on my own response, and I thought my outline might help readers brainstorm about what to say. This is just my own personal opinion. You may have other priorities that you think are important. I’ve previously shared the elements of my road map for ME/CFS, but I got a lot more specific in answering this RFI. You could also look at the P2P Action Items for inspiration. Here’s my outline:

Emerging needs and opportunities:

  1. Investigate energy production and recovery mechanisms.
  2. Confirm the utility of two-day VO2max cardiopulmonary exercise testing (CPET).
  3. Analyze existing samples for biomarker discovery.
  4. Undertake a deep dive for biomarker discovery.
  5. Conduct an accelerated longitudinal study to elucidate the natural history of ME/CFS.
  6. Address the questions of burden of disease and undiagnosed ME/CFS patients.
  7. Invest in development and validation of outcomes measures.
  8. Fund systems biology and computational biology approaches to pathophysiology.
  9. Leverage wearable devices to objectively measure function.

Challenges and barriers to progress:

  1. The failure to reach consensus on case definition is a steep barrier to progress across the ME/CFS landscape.
  2. More resources and heightened urgency are required to address this public health crisis.
  3. ME/CFS patients, researchers and clinicians are not involved in NIH’s efforts in a sustained and meaningful way.
  4. There are very few ME/CFS researchers in training.
  5. Methodological flaws make it challenging to interpret the evidence base.

Gaps and opportunities across the research spectrum:

  1. ME/CFS research requires a coordinated, strategic plan.
  2. Clinical trials and pediatric research are significant gaps in the current approach to ME/CFS research.

If you have the ability to submit responses to NIH, I strongly encourage you to do so. One of the worst outcomes would be if NIH gets very few responses to this RFI. That could reinforce the view that there are just not that many people interested in ME/CFS research. So if you can send even one specific answer to NIH, I hope you will!

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 29 Comments

RFA Ticker, 6/13/16

ticker

A note about reading the fine print: news circulated last week that NIH was making grants to early-stage investigators of ME/CFS. If you only read the headlines or Twitter, you might think these grants are for research. But they aren’t; the grant even isn’t going directly from NIH to these early-stage investigators. NIH made a grant to the IACFS/ME to support conference registration, travel and hotel expenses for up to 10 early stage investigators. The meeting planning committee, not NIH, will select the investigators for this funding.

I think it’s great that IACFS/ME was successful in getting NIH support for the meeting. I also think it’s important to fund junior investigators to attend conferences because they usually don’t have enough grant money to cover travel expenses. But that’s not the same as supporting research by junior investigators.

In other news, NIH issued an update to an RFA included in the tally for the week of May 23rd. An additional $5 million has been added to the RFA for Diabetes Research Centers. I’ve updated the totals to reflect this.

Otherwise it was a pretty modest week for RFAs. Most people would probably not even sneeze at the total of $7.1 million in RFAs issued last week. But ME/CFS patients know that this exceeds all NIH spending on our disease for all of last year. And that’s nothing to sneeze at.

  • Total RFAs Issued by NIH: 240 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,093,240,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
6/6/16 5 $7,100,000 Zero
5/30/16 4 $6,900,000 Zero
5/23/16 8 $42,400,000 Zero
5/16/16 2 $7,800,000 Zero
5/9/16 11 $32,100,000 Zero
5/2/16 8 $32,485,000 Zero
4/25/16 4 $7,500,000 Zero
4/18/16 10 $42,230,000 Zero
4/18/16 10 $42,230,000 Zero
4/11/16 4 $6,825,000 Zero
4/4/16 8 $27,000,000 Zero
3/28/16 13 $161,000,000 Zero
3/21/16 1 $2,700,000 Zero
3/14/16 5 $23,650,000 Zero
3/7/16 9 $82,710,000 Zero
2/29/16 1 $1,890,000 Zero
2/22/16 9 $30,100,000 Zero
2/15/16 4 $26,500,000 Zero
2/8/16 5 $9,500,000 Zero
2/1/16 8 $26,000,000 Zero
1/25/16 4 $9,300,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 5 Comments

RFA Ticker, 6/6/16

ticker

There is an interesting case study among last week’s RFAs. The National Institute of Alcohol Abuse and Alcoholism, along with two other Institutes, issued three RFAs with funding to continue the National Consortium on Alcohol and Neurodevelopment in Adolescence. This caught my eye, given the concept clearance for an ME/CFS consortium.

The National Consortium on Alcohol and Neurodevelopment in Adolescence (NCANDA) has five academic sites and a central data analysis resource. Each site recruits adolescents and collects a standard battery of imaging, cognitive testing, etc. These data are deposited in the central data resource. Each site also collects longitudinal data on the subjects, and runs a research project of its own.

This sounds a lot like the research side of the Centers of Excellence recently recommended by the CFS Advisory Committee. It also sounds a lot like the concept presented by Dr. Vicky Whittemore to the Council of the National Institute of Neurological Diseases and Stroke on May 26th. Dr. Whittemore described “a consortium with multiple sites utilizing common protocols across the clinical projects who can also then develop studies across the sites that would address etiology, potentially imaging, potentially biomarkers studies, genetics, that would all work together.”

Here’s the thing: the three RFAs issued by NIH for NCANDA total $5 million for 2017. That’s it. Five million dollars, and that does not provide funding for actual research projects beyond the characterization of the cohort.

On the one hand, if our RFA following the concept clearance is for $5 million in one year, that’s still $5 million more than we had before. And establishing a consortium for ME/CFS research is an essential step. But on the other hand, NCANDA has a total cohort of only 850 patients. Five million dollars actually does not buy a whole lot, either in the cohort size or support of research.

Don’t get me wrong. I am enthusiastic about the possibility of funding for an ME/CFS consortium. But it’s important to look at other examples in order to gauge our own prospects. Five million dollars to establish an ME/CFS consortium at multiple academic sites plus a central data core would be good news. But it is not sufficient. Not even close.

  • Total RFAs Issued by NIH: 235 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,081,140,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
5/30/16 4 $6,900,000 Zero
5/23/16 8 $37,400,000 Zero
5/16/16 2 $7,800,000 Zero
5/9/16 11 $32,100,000 Zero
5/2/16 8 $32,485,000 Zero
4/25/16 4 $7,500,000 Zero
4/18/16 10 $42,230,000 Zero
4/18/16 10 $42,230,000 Zero
4/11/16 4 $6,825,000 Zero
4/4/16 8 $27,000,000 Zero
3/28/16 13 $161,000,000 Zero
3/21/16 1 $2,700,000 Zero
3/14/16 5 $23,650,000 Zero
3/7/16 9 $82,710,000 Zero
2/29/16 1 $1,890,000 Zero
2/22/16 9 $30,100,000 Zero
2/15/16 4 $26,500,000 Zero
2/8/16 5 $9,500,000 Zero
2/1/16 8 $26,000,000 Zero
1/25/16 4 $9,300,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 3 Comments

RFA Ticker, 5/30/16

ticker

NIH took two steps down the road that leads to more ME/CFS research funding last week, but it’s important to understand what those steps actually mean at this point in time.

First, NIH issued a Request for Information: Soliciting Input for New Research Strategies for ME/CFS. A Request for Information (or RFI) is used by federal agencies to gather public comment on a particular topic. A few things stand out about this RFI:

  • The RFI was issued by the Trans-NIH ME/CFS Working Group and sixteen Institutes.
  • The Working Group wants input on: emerging needs and opportunities; challenges or barriers to progress; and gaps and opportunities across the continuum from basic to clinical studies.
  • “[T]he Trans-NIH ME/CFS Working Group will review and consider the comments received under this RFI with regard to current and future needs and direction for ME/CFS research and research training.”
  • The deadline for response is June 24, 2016.

I can’t emphasize enough how important it is for us to respond to this RFI. To my knowledge, it is the first time our opinions have been solicited as part of a planning process. There is no reason that I can see for us not to offer our best input in response to the request.

Second, Dr. Vicky Whittemore presented a “funding concept” for an ME/CFS RFA to the Council of the National Institute for Neurological Diseases and Stroke on May 26th. But what does that actually mean?

A funding concept “describes the basic purpose, scope, and objectives of a potential solicitation of grants or contracts.” “According to law, experts in the field, usually Council members, must approve a concept before we can announce an initiative.” Approval of a concept by Council does not guarantee that it will become an RFA. In other words, Council approval of a funding concept is a bureaucratic hurdle that must be cleared before detailed work on the potential RFA can proceed.

So what did Dr. Whittemore present to the NINDS Council? Fundamentally, “our concept is that we would put in place a consortium with multiple sites utilizing common protocols across the clinical projects who can also then develop studies across the sites that would address etiology, potentially imaging, potentially biomarkers studies, genetics, that would all work together.” These sites will be at academic centers, and will also include a data-management coordinating center. Another goal of the consortia is to gather a large subject cohort who could eventually participate in clinical trials. Participating NIH Institutes will jointly fund the consortia and data center. After only two questions, the concept was approved by the NINDS Council with no objections or abstentions.

There are several critical things to understand about where we are in the process, now that Council has approved the concept:

  • Dr. Whittemore is now able to proceed with drafting the RFA itself. However, there is no guarantee that an RFA will actually be approved and issued.
  • We have no information on how many sites will be funded in this consortia.
  • We have no information on the amount of money that will be allocated to this RFA.
  • We have no information about whether the RFA will fund research directly. It’s possible that it will provide funding for the costs of getting a site up and running, not covering the cost of research projects.
  • We have no information about the timeline. Dr. Whittemore said at CFSAC that she hoped to issue the RFA in June or July and make awards next year. But at least one Institute describes the process as taking six months after concept clearance.
  • We don’t know if these sites will provide clinical care, so we should not assume that these will be Centers of Excellence as CFSAC recently recommended.
  • We don’t know if NIH will wait for the responses to its RFI before issuing this RFA.
  • We don’t know if there will be any other RFAs for research grants.

In other words, there are a lot of blanks that still need to be filled in. This RFA could be spectacular, it could be dreadful, or it could be somewhere in between. We simply do not know. Interestingly, one of the RFAs NIH issued this week was for Diabetes Research Centers. That RFA specifically requires participating Centers to already have at least $3,000,000 in peer-reviewed research underway, and the RFA does not fund research projects; only administrative and core activities are supported. This RFA for Diabetes Research Centers will provide a total of $13,500,000 for up to nine sites in 2018, approximately $1,500,000 per site.

It remains to be seen whether the steps taken by NIH last week will ultimately get ME/CFS research where we need it to go. In the meantime, the RFAs for other research areas keep rolling upwards.

  • Total RFAs Issued by NIH: 231 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,074,240,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
5/23/16 8 $37,400,000 Zero
5/16/16 2 $7,800,000 Zero
5/9/16 11 $32,100,000 Zero
5/2/16 8 $32,485,000 Zero
4/25/16 4 $7,500,000 Zero
4/18/16 10 $42,230,000 Zero
4/18/16 10 $42,230,000 Zero
4/11/16 4 $6,825,000 Zero
4/4/16 8 $27,000,000 Zero
3/28/16 13 $161,000,000 Zero
3/21/16 1 $2,700,000 Zero
3/14/16 5 $23,650,000 Zero
3/7/16 9 $82,710,000 Zero
2/29/16 1 $1,890,000 Zero
2/22/16 9 $30,100,000 Zero
2/15/16 4 $26,500,000 Zero
2/8/16 5 $9,500,000 Zero
2/1/16 8 $26,000,000 Zero
1/25/16 4 $9,300,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 22 Comments

Brilliant Scientist Among the #MillionsMissing

My friend Barb opened a window into the extraordinary loss she has endured because of ME/CFS. Please read her powerful statement, and count her among the #MillionsMissing.

Thumbnail.-MillionsMissing-US-205x300If you want a tiny peek into what I live with every day, read what I have written here. I rarely post such an in-depth look publicly, because of the stigma around chronic illness and disability. It hurts when people judge me for how sick I am. And many do. It hurts when people leave me because of chronic illness. Which some do. It hurts when people blame me for being sick. Which some do. So I avoid talking “too much” about the specifics of how bad it is. For some people, talking about it at all is “too much.” But today is the day of the ‪#‎MillionsMissing‬ protest against the government’s inaction regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and I can’t go to any of the in-person events because I’m housebound disabled by the illness. I can only protest virtually. So this is my virtual protest: an attempt to educate anyone who cares to learn about the effects of this disease that has stolen my life, and the lives of millions of others like me.

Millions of us are missing from the lives we thought we were going to lead.

I am missing from the work force. I WANT to work. I can’t work any job. I can’t meet deadlines. A few weeks ago, someone offered to pay me to help her do some research for a book she’s writing. I have yet to be able to do a single thing to help. I wanted to try, I’m still trying to try, but my cognitive and other physical functioning is fleeting and unpredictable. I have yet to experience a moment of cognitive function sufficient to allow me to read an article and remember anything I read beyond the first few sentences. I constantly have to start reading over, and retain nothing.

I am missing from any definition of financial security or stability. My meager disability income is insufficient to cover even costs of living. I’m missing from the Medicaid and Food Stamp rolls, because my meager disability income is still higher than the draconically low income cap those programs require. Since I don’t qualify for Medicaid, I don’t qualify for in-home help around the house or errand-running assistance. So I’m 44 years old and dependent on my family for food, shelter and errand-running. It’s quite the indignity for all of us. I am a burden on my family. They love me, but that doesn’t mean they are not burdened by sharing my expenses. My parents should be retired, but they’re working partly in order to support me. My brother also works to support me. That weighs very heavily on me.

I am missing from the grocery store. Even if I could fit food costs into my meager disability income budget (I can’t), I don’t have the strength to go shopping

I am missing from my avocation, sea turtle conservation.

I am missing from field research.

I am missing from laboratory research.

I am missing from wildlife rehabilitation.

I am missing from Herpetology.

I am missing from Marine Biology.

I am missing from Ecology.

I am missing from Environmental Science.

I am missing from Science.

I am missing from Academia. I haven’t even been able to publish my doctoral research because my brain doesn’t work well enough anymore. The article is written, and only needs the final step of finding more recent citations on the subject, but I haven’t even been capable of doing that simple thing for the past eight years that I’ve been disabled.

I AM MISSING FROM MY OWN BRAIN. The loss of my cognitive function, my sharp wit, my brilliance is the most tragic loss I have suffered from this illness. People used to call me a genius. Now I’m average or above average. That might not sound like a big deal to someone who has not suffered the loss of their intellect, but it is a big deal to those of us who have. I can’t read books, I can’t read scientific articles, I can rarely even get through an article in Time magazine if it’s more than half a page. That’s highschool-level reading. My brain is slow, full of fog and mud. Thinking, focusing, concentrating, analyzing, assimilating information, remembering…these are all struggles that wear me out after a short time. So much of the education I busted my ass for has faded away. I expect to get my usual Post-Exertional Relapse from writing this.

I am missing from the stage. I can’t sing any more. Every time I try, I get Post-Exertional Relapse. The technical term is Post-Exertional Malaise, but that term doesn’t adequately describe the debilitating exhaustion and pain that any exercise causes. Singing was one of the greatest pleasures I had in life.

I am missing from the creative world. I used to write poetry, paint, draw, make all kinds of jewelry, make lovely things with polymer clay. I used to have a soaring imagination. Now my head is full of fog, and trying to create anything is like pulling teeth. I have been working on the same necklace for 3 (or is it 4?) months now, and I’m not sure I’m even half done. I am missing from most of my former hobbies, including marine aquariculture and most of herpetoculture. I wouldn’t have any pets if I weren’t willing to spend some of my precious, limited energy on my few small reptile pets. Life without pets is unbearable to me. So I compromise. I borrow energy from the future so I can have a little quality of life with animals now.

I am missing from my friend’s lives. I am missing from social interactions. Weddings, baby showers, barbecues, birthdays, funerals…I can’t travel, so I’m missing all of these things. I couldn’t even go to the funeral of a dear friend. I couldn’t support her husband, either, and he’s a dear friend. The isolation this disease causes is profound and devastating.

I am missing from my own support group. I’m a co-leader of a support group for people like me, yet I’ve only been to one or two of the monthly in-person meetings this year, and have rarely been capable of answering the emails and phone calls that are part of my responsibilities. I WANT to do those things. I WANT to be capable of doing them. I find them fulfilling and uplifting. But they require more physical and cognitive function than I’ve had for a while now.

I am missing from restaurants, movie theaters, plays, and all the other fun extracurricular things I used to take for granted that I can’t do anymore without getting Post-Exertional Relapse.

I am missing from the beach. Sometimes I wonder if a person can literally die from pining for the sea. I wish I were joking. Every year, I see my friend’s photos of their beach vacations, and I feel torn up. I feel whole when I’m at the ocean. It’s my happy place. But I can’t travel, nor do I have the strength to walk down the sand to get to the ocean. So I’m a marine conservationist who hasn’t seen the sea for 10 years.

I am missing from walks in the woods.

I am missing from hikes in the mountains.

I am missing from camping in the wilderness.

I am a naturalist and nature-lover missing from Mother Nature.

I am missing from motherhood. It didn’t happen for me. Now that I’m past reproductive age, it will never happen for me.

I am missing from a loving partnership/relationship. No one wants to date someone as chronically ill as I am. I’ve had nibbles of interest, but they always disappear as soon as they learn how disabled I am. This is what the majority of us experience. Most of us fear that no one will ever love us enough to be able to see past our illness.

I’m missing from a tidy home. I moved into my new place in November of last year, and have only been able to unpack about a dozen boxes. Unpacking is such an epic overexertion that I get Post-Exertional Relapse for days afterwards. Cleaning my own home is a pipe dream.

I am missing from a refreshing night’s sleep. I don’t think I’ve had one this century.

I am missing from pain-free days. I’ve only had one since I came down with the Mononucleosis that developed into ME/CFS in 1996. That one pain-free day happened after I received acupuncture, which I can’t afford now.

I am missing from clinical trials. I have been too sick to travel to the very few that have happened, and can’t afford to pay to participate in the long-distance ones.

I am missing from formal medical education for doctors. There are a handful of doctors in the US who are interested in ME/CFS, and they go out of their way to learn all they can about the disease. But there is little for them to learn, because there is little research or research funding.

I am missing from the only treatment that has made any difference in my symptoms, because Medicare (or most insurance) does not cover Traditional Chinese Medicine, and I can’t afford to pay for it myself. In the 9 years I’ve been disabled, conventional medicine has had nothing to offer me, but herbal medicine made a big difference in my functioning and quality of life when my family and I were able to afford it. That time has come to an end, and so has my hope for recovery as long as the government continues to do nothing. Without government funding for research, large research studies aren’t going to happen and western medicine won’t have anything new to offer us.

I am not alone in any of this.

There are millions of us.

Millions just like me. Some are sicker than me and some are more functional, but all of us struggle to survive with this illness.

Millions dismissed and ignored by the government, medical and research systems.

We are not lazy. We are not crazy. We are not lacking moral fortitude or motivation. We are suffering terribly from an as-yet poorly understood neuroimmune disease. It acts like a neuroimmune disease, anyway. We’d have a better idea of what kind of disease it is if we could get more research going. There was a time when diabetics, people with MS and other invisible diseases that are now legitimized were also dismissed as psychosomatic. What led to legitimacy? Research. What leads to treatments? Research. What leads to research? Government funding.

We need help.

We are sick and tired of surviving, waiting for the government to get its act together and fund research into this disease. We want to LIVE, not just survive. We want to go back to work, or school, or hobbies, or out to eat, or out to a movie, or just have a day in which we don’t have to consider the sickening consequences of every single, tiny thing we do. We would love to have a day in which we could dress ourselves or fix a snack without worrying if we’ll have the energy to eat later. We would love to be able to take having the energy to get out of bed for granted.

Surviving in limbo is hard work.

We just want to LIVE.

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I Am Among the #MillionsMissing

IMG_5469I miss hiking. Getting into the woods, to the enveloping strength of nature, was my favorite thing to do. I wanted to through-hike the Appalachian Trail.

I miss more weddings, graduations, and funerals than I can count.

I miss having children.

I miss being a lawyer. I miss having a career, and working to support myself. I miss the money I could have made, and the lifestyle it would have supported.

I miss my independence. I can’t walk more than a couple minutes and I can’t drive at all. I miss being able to just go to the store when I need something.

I miss having the capacity for normal life.

I miss having multiple projects and priorities, and excelling at all of them.

I miss feeling like I am in command of my body.Thumbnail.-MillionsMissing-US-205x300

I miss believing that every doctor will understand my disease and try to help me.

I miss waking up in the morning feeling rested and ready to start the day.

I miss being spontaneous, instead of meticulously planning every outing for the right timing, right distances, right escape plan.

I miss traveling. I miss believing that it is possible to see what I want to see in the world.

I miss the friends who have fallen away.

I miss throwing dinner parties.

I miss going to concerts.

I miss all the things I am too sick to learn: how to ride a horse, how to shoot a target, how to weave rugs, how to camp backwoods, how to grow food.

Poster-2-300x225I miss having the ability to help others. When my friends and family go through difficult times, I miss being able to bring meals, visit hospitals, clean houses, babysit kids.

I miss having a full, rich, healthy life.

The lack of medical progress, which has sentenced me and millions of others to a life that is less than,  is a direct result of our government’s failure to invest in ME/CFS research. The research dollars must flow. That is our only hope of escape from the life sentence that is this disease.

I am one of the Millions Missing. Don’t let me disappear.

 

 

 

 

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RFA Ticker, 5/23/16

ticker

NIH issued only two RFAs last week, but last week we learned much more about what is coming for ME/CFS.

As I explained in my summary of the CFS Advisory Committee, Dr. Vicky Whittemore reported that she will be presenting a “funding concept” for an RFA to the Council of the National Institute of Neurological Diseases and Stroke on May 26th. If the Council approves her concept, she then will have to seek approval from any other participating Institutes. Once approval from all the funding sources is secured, she (or the Trans-NIH ME/CFS Working Group) will write the RFA. If all goes well, Dr. Whittemore estimated that the RFA would be issued in June or July. Applications would be due in the fall, and funding would begin next year.

In light of NIH policies, Dr. Whittemore could not provide any information about the RFA’s target or budget. We will have to wait for the official announcement. She also seemed to indicate that there could be more than one RFA, although over what time frame is completely unknown. And while Dr. Whittemore seemed confident about the likelihood of the RFA this summer, it should be noted that nothing is guaranteed. The NINDS Council could refuse it, or request modifications. Other participating Institutes (as yet unnamed) may decline as well. And until we can read the RFA, we cannot judge if the concept or amount of funding is sufficient.

I return again to Carol Head’s comments at the CFSAC meeting: “Time is running out to believe in federal changes for funding.” This is the week of the #MillionsMissing protests. I will be missing from my local protest because of this damn disease. I am missing (and have missed) so much of my life. And until there is an actual RFA in my actual hands that actually provides adequate funding for ME/CFS research, I will continue to say there are #MillionsMissing in research dollars.

It’s a very simple equation, really. We are running out of time. And so is NIH.

  • Total RFAs Issued by NIH: 223 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,036,840,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
5/16/16 2 $7,800,000 Zero
5/9/16 11 $32,100,000 Zero
5/2/16 8 $32,485,000 Zero
4/25/16 4 $7,500,000 Zero
4/18/16 10 $42,230,000 Zero
4/18/16 10 $42,230,000 Zero
4/11/16 4 $6,825,000 Zero
4/4/16 8 $27,000,000 Zero
3/28/16 13 $161,000,000 Zero
3/21/16 1 $2,700,000 Zero
3/14/16 5 $23,650,000 Zero
3/7/16 9 $82,710,000 Zero
2/29/16 1 $1,890,000 Zero
2/22/16 9 $30,100,000 Zero
2/15/16 4 $26,500,000 Zero
2/8/16 5 $9,500,000 Zero
2/1/16 8 $26,000,000 Zero
1/25/16 4 $9,300,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 8 Comments