RFA Ticker, 7/25/16

Posted on July 25, 2016 by Jennie Spotila

ticker

Well hey, another Monday! And guess what? It’s another Monday with no ME/CFS RFA to report!

This is like a bad habit you cannot break. They say that the definition of insanity is repeating the same behavior and expecting a different result. I’m feel like we’re stuck in the movie Groundhog Day, doing the same thing over and over and over.

Look, NIH has issued more than 260 RFAs this fiscal year. They have committed over $2.2 billion to those RFAs. With a little over two months left in the fiscal year, we are still waiting to see if we’ll get anything at all.

In March 2016, NIH told the CFS Advisory Committee, “The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive research strategy for ME/CFS research that will include new RFAs.” On the March 8, 2016 telebriefing, Dr. Collins himself said the same thing: “So in addition, on the extramural side, a vigorous, reinvigorated Trans-NIH Working Group is working to define the strategic areas of research that would form the basis for a request for applications to the extramural community, both in the short-term and in the longer term.”

Dr. Vicky Whittemore said at the May 2016 CFSAC meeting that she hoped to issue an RFA in June or July, after concept clearance by the NINDS Council. In an email to me on July 13, 2016, Dr. Whittemore said, “We are working on the ME/CFS research consortium RFA.”

Back in November 2015, Dr. Collins told NPR: “”It will be substantially greater than the current five or six million a year . . . We are going to ramp this up.” WE ARE STILL WAITING.

I know that federal bureaucracy moves slow. I know that Zika virus is the health crisis du jour. I also know that ME patients continue to commit suicide, continue to suffer, continue to wait.

I’m tired of it. How about you?

  • Total RFAs Issued by NIH: 262 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,223,491,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
7/18/16 3 $17,950,000 Zero
7/11/16 10 $75,855,000 Zero
7/4/16 0 $0 Zero
6/27/16 3 $12,971,000 Zero
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 , , , , , , , , , , , , , | 8 Comments

Naming

Posted on July 22, 2016 by Jennie Spotila

maxresdefaultDo you notice anything different at the top of the page?

Occupy CFS is now Occupy M.E.

I thought long and hard about the change, and would like to share my reasoning.

First of all, CFS is a crappy name. We all hate it. CFS is not only a poor descriptor of our disease, but it has contributed to the pejorative view of our disease. How many times has someone said to you, “I get tired too.” Or had an encounter with a doctor who says, “You don’t look tired.” The name CFS and the psychogenic theory attached to it are major contributors in the poor state of clinical care and research.

Second, the National Academy of Medicine (formerly the Institute of Medicine) report concluded, “The committee agrees that the term ‘chronic fatigue syndrome’ can result in stigmatization and trivialization and should no longer be used as the name of this illness.” (p. 227) (emphasis added). I agree.

So why didn’t I go with Systemic Exertion Intolerance Disease (SEID)? Basically, because no one likes it. There’s no momentum behind the name. No one is using the name. And I am not aware of any effort to get recognition of the name as a valid replacement for “CFS”.

Why did I go with ME, when the National Academy’s report said, “the term ‘encephalomyelitis’ is not well supported by the evidence” and does not convey “the full complexity of this disorder.” (p. 227) I chose to stick with myalgic encephalomyelitis simply because it is the best option available at this time. There is a history of its use in the literature, both on its own and as ME/CFS, and has the beginning of acceptance by the organizations and individuals using ME/CFS.

Why not ME/CFS, since that seems to be the most common name in usage in the US? Because it perpetuates the name CFS, and there are huge political and scientific implications for that. I think it is time to make a clean break, and transition to a new name.

ME is not the perfect name. It has downsides. But I think it’s the best option on the table. For years, some advocates and organizations have argued that we should not use ME if the scientific and medical communities in the US won’t use it. The idea was to wait until science understood the pathogenesis of the disease, and that would give us the right name. I used to be one of the advocates who thought we should wait.

Not any more. I’ve waited twenty years, and others have waited longer. CFS has got to go. That’s all there is to it. Of the other options, ME is the best we’ve got. Occupy ME it is.

If you subscribe to the blog, you will continue to get each new post in your email inbox. If you don’t subscribe, you can do so at the top of the right side of the page. I do not use emails for any purpose besides the subscription to the posts.

The entire Occupy CFS site has been migrated to occupyme.net, and all the internal links have been updated. In addition, occupycfs.com will automatically point to occupyme.net, so you should still be able to find old posts. I’ve tested the site and it all seems to be working smoothly, but please let me know if you find any hiccups.

Nothing else about the blog or my advocacy has changed, except the name. But this is a big change, and its time has come. I hope you approve.

Posted in Advocacy, Occupying | Tagged , , , , , , , , , | 26 Comments

RFA Ticker, 7/18/16

Posted on July 18, 2016 by Jennie Spotila

ticker

Last week was awesome for researchers waiting on an RFA . . . at least for non-ME/CFS researchers anyway. NIH issued RFAs totaling more than $75 million, pushing the fiscal year total over the $2.2 billion mark.

Life is especially good for researchers interested in Autism Centers of Excellence ($25 million) or a pediatric data center for birth defects and cancer ($22.8 million). Keep these numbers in mind, if/when ME/CFS gets its research consortium RFA (remember, the concept was approved by the NINDS Council in May).

And just as a refresher, I do occasionally get questions about why I haven’t counted recently announced ME/CFS grants in the Ticker. I explain more fully in the inaugural RFA Ticker post, but the short answer is that those grants were made under general program announcements, not an RFA.

Why does that matter? Because an RFA is a set aside amount of funding for a specific purpose, and it is far more likely to attract applications than general program announcements. Furthermore, RFAs have been repeatedly recommended by the CFS Advisory Committee and have been a focus of advocacy efforts for ten years.

If NIH is committed to changing its approach to ME/CFS, then RFAs are an essential piece of that change. That is why I am focused on the RFA Ticker.

  • Total RFAs Issued by NIH: 259 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,205,541,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
7/11/16 10 $75,855,000 Zero
7/4/16 0 $0 Zero
6/27/16 3 $12,971,000 Zero
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 , , , , , , , , , , , , , | 4 Comments

RFA Ticker, 7/11/16

Posted on July 12, 2016 by Jennie Spotila

tickerNo RFAs for anybody last week. But there was a very interesting Request for Information issued last week that may have implications for ME/CFS research.

The RFI requests information that might be useful in “the development of a comprehensive research program focused on the relationship of fatigue to health.” This research program will be funded through the NIH Common Fund, a trans-NIH program with $565 million in funding this year. The Common Fund is the home of major projects such as the Human Microbiome Project and the Big Data to Knowledge program.

The Common Fund would be a good home for ME/CFS research, since it is strategic, cross-Institute, and has a large budget. So what does it mean that the Common Fund is looking at fatigue and not ME/CFS? This seems to line up with Dr. Collins’s comments during his appearance on the Charlie Rose show on November 4, 2015. In answering a question about the NIH’s new effort on chronic fatigue syndrome, Collins said NIH will:

figure out what is going on in this condition. And if we understood that maybe we’d know what fatigue of other sorts is all about. Why do people in chemotherapy get fatigue? We don’t really know, wouldn’t it be nice to have that answer.

I asked Dr. Vicky Whittemore to comment on the relationship between this RFI (she is the primary contact) and ME/CFS.  As of this writing, I have not heard back. UPDATE July 14, 2016: Dr. Vicky Whittemore (the primary contact on this new RFI) told me:

The proposed Common Fund program on fatigue is in the planning phases after being approved by the Council of Council.  The initiative will need to be approved by NIH leadership (this fall) before it moves forward, so there are currently no funds or resources approved for this program. It is a separate effort but if it moves forward, we will hopefully learn a lot about the underlying mechanisms of fatigue that could be applicable to the study of ME/CFS and other diseases, as well as fatigue in the normal, healthy population.

ME/CFS advocates have spent years telling NIH that our disease is not fatigue. It strikes me as the height of crazy that NIH may have finally listened, and is therefore about to pour a substantial budget (via the Common Fund) into fatigue research and not ME/CFS.

UPDATE July 14, 2016: It would be the height of crazy if NIH decides to devote substantial resources to fatigue research, and not ME/CFS. If NIH is willing to pour money into fatigue but not into ME/CFS, if we continue to be left on the sidelines or the bottom of the barrel, then advocates will be fully justified in interpreting those decisions as evidence of prejudice against ME/CFS, its researchers, and its sufferers. I hope this will not be the case. I hope that ME/CFS will be recognized as a serious disease  – not just the symptom of fatigue – deserving of substantial resources. If a fatigue program through the Common Fund is the way we get that, then that would be fine with me.

  • Total RFAs Issued by NIH: 249 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,129,686,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
7/4/16 0 $0 Zero
6/27/16 3 $12,971,000 Zero
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 , , , , , , , , , , , | 15 Comments

Scandal

Posted on July 10, 2016 by Jennie Spotila

ScandalGive me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism at University of California, Berkeley) about the PACE trial of Cognitive Behavioral and Graded Exercise Therapies for the treatment of CFS.

The fact that this incredibly flawed study has not been retracted (let alone was published in the first place) is a scientific scandal of epic proportions, and it is harming patients right now.

Take 90 minutes and listen to David Tuller explain it all. It is worth your time. I can only explain it by analogy.

Imagine that there is a clinical trial of a chemotherapy drug for breast cancer. Imagine the following facts about that chemotherapy clinical trial:

  • Patients did not give valid informed consent because they were not told about that several of the investigators were consultants for the manufacturer of the drug.
  • The trial is not blinded, so the subjects and the scientists know who is getting the trial drug and who is not. There is also no placebo in the trial.
  • Not everyone in the trial has breast cancer; some have other kinds of cancer.
  • To get in the trial, a subject had to have a tumor smaller than 1.5 cm. Post hoc changes in design declared that tumors smaller than 2 cm would be counted as success. In other words, you could enter the trial with a 1.5 cm tumor, the tumor could get bigger, and as long as it was smaller than 2 cm you were counted as successfully treated.
  • At the beginning of the trial, 13% of the trial subjects already met the primary outcome measurement of a tumor being less than 2cm in size.
  • Subjects treated with the trial drug are more likely to have their cancers progress – either spreading to new sites or getting larger. The scientists insist this is not true.
  • Despite all the flaws and other decisions which interpret the data very favorably for the trial drug, only 25% of people getting the trial drug show any improvement at all.

No one in their right mind would believe that this chemotherapy drug should be approved. No Institutional Review Board would even approve such a trial in the first place, and no journal would publish such a paper. The scientists would be investigated for fraud and misconduct. No medical association or government agency would cite this study, nor rely upon it in formulating treatment guidelines.

Yet this is EXACTLY the level of scientific scandal in the PACE trial.

I am not exaggerating. Every bullet point in that list simply takes problems in the PACE trial and projects them onto a chemotherapy clinical trial. And that is not even the full exhaustive list of PACE flaws.

As I reported in May, twelve ME/CFS organizations asked the Centers for Disease Control remove all recommendations based on the PACE trial from its medical education material, and asked the Agency for Healthcare Research and Quality to examine the issues raised in Dr. Tuller’s investigation and revise its systematic evidence review. To my knowledge, neither agency has taken action on these requests.

Patients are being harmed – right now, today – by recommendations based on the fatally flawed PACE trial and the follow up papers. This study should never have been conducted. Once conducted, it should never have been published. Now published, it should be retracted.

The study was published five years ago.

Listen to David Tuller’s explanation of what he found in his investigation of the PACE trial. If you agree that science can and must do better, if you agree that the PACE trial should be independently investigated, then speak out! Write to The Lancet, as these scientists have done and as more than 12,000 advocates have done, and demand that CFS science be held to the same standard as any other kind of science.

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , | 19 Comments

RFA Ticker, 7/4/16

Posted on July 4, 2016 by Jennie Spotila

tickerWe are halfway through the calendar year 2016.

There are only three months left in Fiscal Year 2016.

We have no RFAs for ME/CFS.

Time is slipping away.

  • Total RFAs Issued by NIH: 249 (October 2015 to date)
  • Total Dollars Committed to RFAs: $2,129,686,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
6/27/16 3 $12,971,000 Zero
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 , , , , , , , , , , , | 4 Comments

RFA Ticker, 6/27/16

Posted on June 27, 2016 by Jennie Spotila

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 , , , , , , , , , , , | 24 Comments

The Caffeine Disaster

Posted on June 22, 2016 by Jennie Spotila

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 , , , , , , | 28 Comments

RFA Ticker, 6/20/16

Posted on June 20, 2016 by Jennie Spotila

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.

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Responding to the NIH RFI

Posted on June 14, 2016 by Jennie Spotila

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 , , , , , , , , , , , , | 31 Comments