The letter we wish the NIH Director would send to the Chronic Fatigue Syndrome community.
Dear Dr. Collins,
Thank you for taking the time to meet with representatives of The Myalgic Encephalomyelitis Action Network (#MEAction) on Friday, December 7th. We appreciate your willingness to listen to our concerns and for the participation of Dr. Koroshetz, Dr. Nath, and NIH program staff.
We also appreciate that after our meeting with you, Dr. Koroshetz, Dr. Nath, and NIH program staff continued to meet with us for an extended time. We had useful discussions on various areas for NIH to make incremental progress and will follow up with them.
However, it was evident from our meeting that NIH lacks the urgency and commitment needed to deliver diagnostics and treatments to people with ME in time to save the millions of people whose lives and futures hang in the balance.
The NANDS working group’s charge lacks the mandate to achieve the kind of bold, time-driven outcomes we know the NIH can accomplish when the will is there. If NIH fails to act quickly and decisively, it will effectively sentence a generation who has already lived and waited decades for real progress, to die without ever seeing relief. Meanwhile, each year, thousands more Americans will receive their diagnosis without any more meaningful access to treatment or care than those who became ill in the 1980s.
You can accept this status quo, or you can do everything in your power to break this cycle.
The recent work of expert clinicians and researchers again demonstrate that there are numerous, untapped opportunities to deliver the first FDA-approved treatments and diagnostics within five years. But this will only happen through your leadership and innovation. You have the opportunity and position to make a dramatic difference for people with ME. We urge you to establish a strategic plan and provide the resources and vision needed to deliver these outcomes to people with ME as quickly as possible.
Sincerely,
Ben HsuBorger #MEAction
Dear Ben,
Thank you for your letter. We enjoyed meeting with you. I think you'll be surprised to hear our good news.
We have decided that, because MECFS is so much like AIDS, we are going to immediately combine all AIDS and Chronic Fatigue Syndrome research into one big Manhattan Project kind of program. Chronic Fatigue Syndrome and AIDS will share all research funding. From now on, AIDS conferences will also be Chronic Fatigue Syndrome conferences. Our powerful biomedical institution will stop pretending that Chronic Fatigue Syndrome has nothing to do with AIDS. Any researcher who continues to promote that myth will be asked to find a new employer.
We have also decided that, because both AIDS and Chronic Fatigue Syndrome involve HHV-6 and its related viruses, we are going to give research priority to that virus. It has become clear that we are in the middle of an HHV-6/7/8 epidemic that threatens us all. As you know, The University of Wurzburg and Bhupesh Prusty have pretty much nailed the role of HHV-6 in Chronic Fatigue Syndrome.
We are also going to devote a substantial part of our budget to researching the use of AIDS drugs on Chronic Fatigue Syndrome patients. There have been several compelling reports of Chronic Fatigue Syndrome patients getting better on AIDS drugs like protease inhibitors and Ampligen. If studies support the use of these drugs, I will personally go to Congress and the White House to ask that all MECFS patients receive free treatment. You all have suffered enough.
We're also going to ask Robert Gallo, the scientist who claimed to have discovered the Chronic Fatigue Syndrome virus, HHV-6, to oversee trials of a drug Epiphany Biosciences (a company he co-founded) has developed for HHV-6. The promising drug is called Valomaciclovir.
I will also ask Dr. Gallo to fly to the headquarters of the World Health Organization to urge them to also combine all AIDS and Chronic Fatigue Syndrome research and treatment efforts.
We have also decided to make Chronic Fatigue Syndrome a National Notifiable Disease so we can finally determine how many cases there really are.
Given that it is clear MECFS is contagious, we are assigning a team of epidemiologists to monitor the transmission of the illness. We will be especially interested in the way that it is spread in families, schools, businesses, and healthcare settings. We will try to figure out what people can do to protect themselves from contracting this illness. But I do have to warn you that, given that this epidemic is several decades old, there may be little we can do to control it. We are concerned that we may not even be able to control the transmission of MECFS in our NIH facilities.
I hope this new agenda meets with your approval. I also hope you enjoyed the special NIH donuts we served at our meeting. I'm sorry I did not have time to pull out my famous guitar and sing "The Lady Upstairs," the very moving Chronic Fatigue Syndrome song I often play for my MECFS research staff to inspire them.
Thank you for being a passionate stakeholder and I look forward to reporting on our research progress in the near future.
Francis S. Collins
