NIH Time Warp

Let’s take a quiz. I have a letter that was sent on behalf of Dr. Francis Collins, Director of NIH, to a person with ME, and I want you to guess when that letter was sent. Here’s an excerpt:

First, let me express my heartfelt concern for you and the millions of other men and women suffering from ME/CFS. This is a terrible disease and we must all work together, doing what each of us can, to find safe and effective treatments for ME/CFS and restore lives to health.

When do you think that was written? Ok, here’s another quote from the same letter:

It is through the receipt of meritorious research proposals that funding can increase.

Have I given it away? Here’s the last quote:

In early September, Dr. Collins reiterated NIH’s commitment to accelerating biomedical research focused on ME/CFS.

Ok, pencils down and all that. When did NIH send that letter?

Think carefully about your answer. I did give you a clue by saying it was sent on behalf of Dr. Collins, who became Director of NIH in 2009. Do you have a date in mind?

October 28, 2010. That’s right. The NIH sent this letter in 2010.

I asked you to guess the date because that letter could have been written yesterday. Very little has changed. NIH still professes to care deeply about people with ME. NIH is still pursing the strategy of waiting for research proposals to increase, rather than taking sufficient and meaningful action to stimulate research.

This letter was sent to Cheryl M. after she wrote to Dr. Collins to plead with him for more research funding. Cheryl’s letter and NIH’s response basically speak for themselves, so I have reproduced them in full here with only a few footnotes.

When she wrote to Dr. Collins, Cheryl had been bedridden for three years. Now, almost eight years later, she is still confined to a bed or recliner. Cheryl cannot leave her home more than a couple hours at a time, every few weeks. She has now been sick for 18 years.

NIH and Dr. Collins: you are brilliant at expressing sympathy. You are also brilliant at making it look like you are doing everything possible to help us. You are brilliant at telling us to be patient, and promising that you are going to fix this.

I think everyone with ME will join me in saying: It is time to fix this. Be brilliant at funding ME research. Be brilliant at finding creative ways to jump start this field, because it has languished for decades without the funding and serious attention that is desperately needed. Be brilliant at this, because Cheryl’s life is wasting away, along with at least one million others.

Here is Cheryl’s letter:

Dr. Collins,

Thank you for your participation in the recent conference on XMRV. It has filled me with much hope that our illness is being brought to light and hopefully treatments are on the horizon.

I have been disabled for 10 years due to CFS/ME and related illnesses. Due to misdiagnosis and taking a long time for an accurate diagnosis, my health deteriorated to the point of having to give up all the things that I previously did and enjoyed.

I was a very active woman before getting sick. I worked with special needs children and families, developed early childhood curriculum, was a workshop presenter/speaker for peers, volunteered heavily at my church and in the community.*

Now I am a drain on my families [sic] (parents included) finances and financial security. My illness cost my husband his job and he took a much lesser paying one to be closer to home and helping me more.

I have been primarily bedridden for 3 years. I long for the simple things in life like having the energy to walk around my block, go to church, go out with friends. Those days are gone but not forgotten.

I urge you to please fund XMRV/CFS/ME research generously. I pray for the day that I can continue an active life, as do all of the others that I know who are affected severely by this illness. So many have died by their own hands because they were too tired to keep on fighting. Please be a part of our solution. Please hear our cries for help!

Sincerely,

Cheryl M.

And here is NIH’s reply to Cheryl:

Dr. Francis Collins, Director, National Institutes of Health, has asked me to respond to your inquiry regarding National Institutes of Health (NIH)-supported research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

First, let me express my heartfelt concern for you and the millions of other men and women suffering from ME/CFS. This is a terrible disease and we must all work together, doing what each of us can, to find safe and effective treatments for ME/CFS and restore lives to health.

In early September, Dr. Collins reiterated NIH’s commitment to accelerating biomedical research focused on ME/CFS. It is through the receipt of meritorious research proposals that funding can increase. In FY 2010, the NIH provided approximately $6 million for ME/CFS and XMRV research** grants, contracts, and other types of awards to universities, hospitals and research organizations, including the Whittemore Peterson Institute. An additional $5 million was awarded to investigators studying aspects of ME/CFS, such as pain, neurological complications, genetics, blood pressure, retrovirology, and sensory processing.***

NIH is currently soliciting ME/CFS research applications through two Program Announcements. To help investigators prepare applications for research funding, NIH holds grant-writing workshops and assigns program officials to answer questions and assist with their application submissions. Dr. Collins recently asked the National Institute of Allergy and Infectious Diseases, one of the 27 Institutes and Centers at the NIH, to study a possible connection between XMRV infection and ME/CFS by using blood samples from patients diagnosed with ME/CFS.

The Trans-NIH ME/CFS Research Working Group (WG) is composed of experienced program officials highly committed to helping advance NIH supported research on ME/CFS at universities, hospitals and research institutions. The WG members serve as conduits to their respective NIH Institutes or Centers to facilitate communication between scientists and NIH leadership. The WG is hosting a major State of the Knowledge Workshop in 2011 to bring together scientists and clinicians to evaluate current ME/CFS data, propose priority areas that need further attention and then identify mechanisms for supporting such critical research.

Additionally, the NIH works with many Federal agencies and ME/CFS advocacy groups through the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee. It is also expected that by cooperating in planning interdisciplinary initiatives, the NIH and its partners will increase support for multidisciplinary and interdisciplinary research with the goal of finding treatments and, hopefully, a cure as rapidly as possible.

Thank you again for your interest in the NIH efforts to increase ME/CFS research. We at NIH fully support your assertion that ME/CFS patients deserve the very best scientific information we can possibly produce.

Sincerely Yours,

Dennis F. Mangan, Ph.D.

Co-Chair, Trans-NIH ME/CFS Working Group

 

*I wish we knew what Cheryl could have been contributing to her profession and community if she had not been sick for the last 18 years.

**Of that $6 million, 29% went to XMRV and 6.5% was not related to ME/CFS, which means that in 2010 NIH actually spent $4.2 million on ME/CFS research. In FY 2011 (which had already started when this letter was written), NIH spent $4.6 million. And in FY 2012? $3.6 million. So funding was going down at the same time these sympathy statements were sent to Cheryl!

***I have no idea which grants this $5 million includes, but NIH has a pattern of claiming that research tangentially related to ME/CFS is directly applicable. This helps inflate NIH’s numbers but there is no way to fact check the statement in this letter.