I Thought It Was a Typo…

By Zaher Nahle, PhD, MPA
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative

zaher-letterDuring the course of interviewing for this position, I was reviewing the amount of government spending on ME/CFS. I came across a figure of $5.4 million in one article. I assumed the number must have been a typo. I thought, not only as a rational reader, but also as a scientist who directed a research laboratory and balanced budgets, that it must be $5 billion, with a “b,” not million with an “m.” After all, for a devastating illness destroying the lives of at least 2.5 million people in the United States alone and causing north of $17 billion per year in economic losses, a $5 billion expenditure seemed reasonable, if not absolutely necessary.

The real shocker, however, came the next day when I ran into that same $5 million figure from a separate, trusted source. My shock turned to outrage on behalf of the patient community. Could it be true? Could the mighty U.S. government commit only $5 million for this devastating, woefully understudied disease with no cure, diagnostics or defined pathology? To put things in perspective, $5 million can barely furnish a modest core facility in one science department and is the individual yearly budget of hundreds of medium-size labs investigating other diseases. It is also a fraction of what Roche Pharmaceuticals, for instance, spends on Research & Development in a single week.

And just when you think that you have seen it all, now even that measly $5.4 million was unashamedly stricken from the prospective Senate budget of 2016, the only disease to get such remarkable “attention.” The sad irony lies in the stark contrast of how we generously commit tens of billions per year in (commendable) foreign aid to alleviate human suffering across the globe, but fail to invest crumbs in the wellbeing of our own vulnerable population, people with ME/CFS.

While I have never been one to subscribe to conspiracy theories, I have to wonder why the government continues to fumble repeatedly on this particular issue. I’m reminded of the words of the science writer Arthur C. Clark in 3001, The Final Odyssey: “Never attribute to malevolence what is merely due to incompetence.” ME/CFS patients are a proud and a resilient bunch who are not asking for handouts. They are merely demanding what is their inalienable right: that their government invest in finding cures so that they can live dignified, productive and meaningful lives like everyone else.

At the Solve ME/CFS Initiative, we are doing all we can to fill that enormous research gap and drive collaborations that foster promising discoveries. That said, we insist on a clear, tractable and transparent federal funding agenda for ME/CFS as the most effective path toward a cure. It is the responsibility of the government to find cures for diseases that afflict millions of its citizens, not the other way round. We are darn serious about that!

40 comments on “I Thought It Was a Typo…

  1. One of the mysteries in this story is how the system can treat patients like this.

    Letting people suffer for decades while doing essentially nothing is something that a normal person wouldn’t be able to do because it goes against the good in their heart. Putting the human aspects aside for a moment, even from a purely economic perspective this behaviour is folly.

    Ignorance about the nature and severity of the problem exists and is a problem but in my opinion it cannot be the only reason for the continued neglect. Good information is widely available nowadays.

    I think the promotion of psychiatric explanations (psychosomatic, manipulation, faking, etc) in the past have been what is essentially a dehumanization campaign whose effects still linger and somehow make it morally acceptable to stand by while people in need are refused adequate help. At least’s the explanation I’ve given myself. I wonder what goes on in the heads of the decision makers.

    • You are right fractal. I talk about this at length in the coming issue of the Chronicle (our print publication)…please follow us if you can. Maybe the next blog should be on that. Thank you for keeping the conversation live about this diversion…

  2. We were kicked to the curb in 2002 when NIAID dumped the CFS research. This is documented . In 2002 – to 2012 we had less than 5 million and some of that was diverted to fatiguing conditions. I, as well as others have the FOIA papers to prove this. Despite being able to show neglect, 5 million is an improvement from what it was. HAH. HAPPY HAPPY THAT scientists are speaking out. GOOD 50 million is a start..

  3. Ain’t happening in my lifetime. It’s over for me. I can’t even get a hearing ear from my MDs and I was a busy MedSurg RN. Bed ridden x 8 yrs now. Hanging by a thread.

    • Don’t give up. I was bedridden for years and it has lightened up considerably with exercise, diet, therapy and friends and caring doctors. Where do you live?

      • Kona. I live in Kona lol. Naw. I do have a very severe case. I’m an RN. I’ve tried western, eastern, northern, southern, maybe even martian remedies – every single thing I’ve taken, not taken, drank, ate, popped, shot. Nothing improves, only worsens very much with any activity, noise, light, thinking. I am one of the ones who must lay quite flat, still, very quiet, kind of darkened room, and not get over heated by temps. It’s awful. But I am happy for anyone who has an improvement. No, I cannot sit or stand, my blood pressure drops too low. I have to stay flat. I cannot fly anywhere. And I’ve been to so many specialists, really – dozens – I refuse to go any more. Content with my baseline. Hope you “hear” me. I ain’t trying anything else. PS If you are not rich or famous over here, you are not getting anyone’s attention. Just the way it is.

        • Dear Kona, I am also a nurse. Can you write a letter, as I did, to ask the senate to reinstate the funding for research? Write to Senator Barbara Mikulski,U.S. Senate Committee on Appropriations, Rm. S146A, The Capitol, Wash., DC 20510. Tell her you are a nurse who cannot work due to CFS. Nansy

          • Yes, I can write and I have written but will do it again. Together, perhaps thousands or millions of us around the world can form one voice, weak and invisible from our beds, but loud enough to roar this to the world.

      • Dr. Zaher Nahle,
        Thank you so much for your time, honesty and believing in patients like us. I am so discouraged by the NIH appointing Dr. Mellott, or however it’s spelled, who believes this is somatic, psychological, and research money spent on someone like him is a comlete outrage to the millions of suffering women and men that can no longer trust the NIH.

    • Dear Kona Rose,
      You are not alone. I don’t see a cure during my lifetime to give me back the incredible energy I once had. I miss being the old me. I was a school teacher and then was a Count Children’s Services Social Worker and Parent Educator. I held classes and worked with parents and parenting skills either at the office, sometimes with a Sheriff’s Deputy watching through the two-way glass, but more often, one-to-one in the parent’s home. I first got Fibromyalgia and then ME/CFS. I ended up with a medical retirement that was taken away less than three years after I had it. My medical doctors and the large number of Rx’s I take each day that make life livable are not curing me. They are just helping me to cope.

      I am mostly home ridden and rarely get out. I am too tired to. My husband now has ME/CFS and FM as well.

      • Hi PeggyTree, I am so sorry your life has been shunted away, too. It’s so hard to grieve for the lives we used to live compared to agonizing in bed, invisible to the world. I surely hope you have better days and that your husband’s case is “mild.” All of my best wishes to you – you are not alone! Isaiah 33:24 do not give up, ok?

        • Dear Kona Rose,
          I’ll never give up praying for a cure for us all.

          I am just so very disappointed that, when we finally got federally recognized and got funding, that the NIH gives the director position to a doctor who thinks our condition(s) are all somatic. That’s why I can’t understand why solvecfs.org would allow anyone like this quack to be able to take the money and screw not just Americans, but the other millions of patients around the world. It makes my hope diminish, but I only have prayer to resort to and my suggestion for those of us who are suffering is to pray. I sincerely hope that this quack is replaced. This is not a psychiatric problem. At least I don’t believe that at all.

      • Hi Peggy,, We are living in a very bad nightmare. I’m very sorry your husband has acquired the ME/CFS. I believe that the fibro is a variant or precursor to ME/CFS because of the large numbers of patients who have “both.” I am exhausted of being ill and in pain, going in circles with doctors, and try to conserve the small amount of energy I have to just take care of basic necessities at home when I can. Feels like someone parked a truck on me and left. I fight to get up, move each leg a step, then back to bed. All I can think of is to hang onto Bible promises such as Isaiah 33:24. Without those hopes, enduring would feel so fruitless. Gentle hugs to you and your hubby ♥

  4. Thank you Dr. Nahle for your candor and insight.
    This is a very powerful letter. As a patient it gives me hope to see scientists of your caliber entering the ME field – despite the abysmal funding. I am looking forward to seeing what you accomplish for the ME community. Its well past time for an end to the indifference and neglect of government bodies to this disease.

    In case you haven’t seen it, 25 prominent scientists (including a few nobel laureates), recently wrote a letter asking for increased ME funding:

    And Ronald Davis has spoken out about the way ME grant applications are treated at the NIH:

    Its time for change, and I hope you will be part of leading the way.

    • Thank you so much…very supportive of this letter indeed…and added my name to it if you scroll down. Than you for the kind words.

  5. I think that we got off on the wrong foot with the CDC director in 1983 and things just got entrenched in Washington with his thinking. I can’t remember his name, it bears forgetting, consider what his irrational thinking has done to us. I wonder if I will see any relief in my lifetime. I am 56. I’ve been waiting for a cure for 25 years, two months and two weeks. My family has abandoned me.

    • Kasha, I am so sorry that your family has abandoned you. This illness can be isolating at the very least. If Drs would get over their God complexes. When they can’t find a diagnosible illness, some, label us and send us to a psychiatrist. And once an illness has been perceived as being all-in-our- heads, we get dismissed by said Drs., we get abandoned, scorned, and laughed at by our “loved ones” and friends(?). I felt,for years, that I was the subject of many sustained conversations by my family and particularly by my husbands family. I did get an apology, from my mother-in-law, for her part in the years worth of these conversations that she was involved in. For my self,I forgave her and the others. The 45 years of my health struggles (one thing after another) were hard on everyone around me. Now to the point of this post – what kept me going and kept me here on earth all this time is – I knew and God knew I wasn’t faking it, I wasn’t milking it for attention,and I wasn’t using it to get out of working. I was coping with all of it, the best that I could. There were many many tears shed for all of the family gatherings, school plays, and such that I couldn’t attend. It’s a very lonely existence.
      Perhaps, someday, your family will learn more and remember the loving person you are and the person you were before you got Sick. My best to you, Wendy

    • Hugs to you Kasha,
      I will pray for you. I don’t think anyone in my family understands the magnitude of having ME/CFS and FM. My husband does.because he has the same illnesses now.

      Unless you have the diseaaes we have, it’s like talking to a wall to make people understand. It’s so frustrating. At least what little family we have left seem to understand. I hope you find someone who understands what you are going through. There are a lot of rooms in Facebook where you can discuss problems with people who have our problems. They become somewhat like an extended family. Good luck.

  6. The first thing to do is to separate ME from CFS. Myalgic encephalomyelitis is a specific disease with causes and cures, and a US spending budget of zero. The 5.4 million were for CFS, which are criteria to select patients suffering from unexplained fatigue and malaise for research. ME has no unexplained symtoms.

  7. Thanks you, Dr Nahle, for your strong opinion on behalf of us. I think Prof Ian Lipkin expresses what lies behind our neglect:

    ‘I have been in competition now twice to get [my ME
    research] funded, and the people there who reviewed me gave me abysmal scores.
    And the critiques of my work were unfair, and one of the people who critiqued
    my work said, in fact, that this is a psychosomatic illness. I was floored. I
    protested, and for reasons that are obscure to me this same individual wound up
    back on the study section, and I got a similar unfundable score. Am I upset
    about this? Absolutely.’
    It’s due to pure prejudice and ignorance about ME at the least.

    • Thank you so much for sharing that…I add my voice to yours. Kudos to our researchers who are never giving up.

  8. WRITE TO YOUR SENATOR: Is your Senator on this committee? Then start your letter with” Dear Senator —–,, I am a constituent and I need your help because I suffer from chronic fatigue syndrome. Please reinstate the $5.4M in the budget—“. Speak from your heart, make it short, include your phone and address.

  9. Thank you all for your comments but more importantly for your support of one another our Wendy, Kasha, Guido, acacia1, Nansy, Kona, username, shannah, fractal, maveet, Patricia and all…This is what I wrote to Roxy yesterday…thank you for fighting the fight!
    Zaher Nahle A burden? no my friend from Kalamazoo, not a burden…you are the indomitable spirit of the righteous pioneers, the ones who fight the fight and charter that hard path, the Sacagaweas of this lifetime, people who say not in my name…and all those who chant against disenfranchisement and unjust etiolation, man-made or otherwie – a battler not a burden, Roxy Barber.

    • Roxy, You can contribute. Write a letter to Senator Barbara Mikulski, U.S. Senate Committee on Appropriations, Rm S146A, The Capitol, Wash., DC 20510. Ask her to reinstate the funding for CFS research in the budget. No email, must be a letter.

  10. Due to disease, I can’t type much. However, I feel the need to say THANK YOU!! You could never realize how much it means to hear that there are people out there fighting for us…

Comments are closed.