Monday, March 14, 2011

ME&CFS Patients and Researchers Share a Common Goal

Recently I've been puzzled by a couple of articles portraying a drama that simply doesn't exist. I guess they think it's a good story: Impatient Patients versus Sober Scientists. It's an odd story. It doesn't add up and I'll tell you why.

In this story we desperate patients whine and importune the scientific community, demanding that they put carts before horses and give us a cure now, but research it later. The wise scientists sigh that while they understand our concern, we're actually impeding progress by disturbing them while they work in their ivory towers in the only reasonable way: slowly and painstakingly, making certain that they won't endanger us. We wouldn't want to take a drug that wasn't proven safe, would we?

Then there's the third figure: between the Sober Scientists and the Impatient Patients stands the Rogue Researcher. She understands the patients and we adore her. We take up all her lab time with our hero-worship and tearful phone calls, but we do that because she's the only one who seems to really care. She has gone out on a limb for us, trying to push her exciting new Theory X past the Reasonable Reviewers and Dauntless Doubters in the community of Sober Scientists.

When a scientific paper is published which seems to confirm Theory X, the Rogue Researcher quickly claims vindication, but when many more papers are more swiftly published which call Theory X into question she is even swifter to discredit them.

Those pesky Impatient Patients, meanwhile, refuse to see how much progress science is making in spite of an almost complete lack of funding.

It's a fascinating story, full of heroes, villains, and victims, and you can choose for yourself which is which. But it's a lie.

The true story can be seen in part right here:

Thanks to the ME/CFS Worldwide Patient Alliance for the easy-to-follow chart. It shows, clearly, how woefully underfunded research is for ME/CFS in the US as compared to some other neuroimmune diseases.

Take NIH's 2012 budget for CFS versus Lyme, for example. (CFS is the only name under which the disease receives research funding in the US; the name is a separate issue and since we are discussing US government funding here I'll call it what they call it.)

There are nearly 7 times more people suffering from CFS than from Lyme, but Lyme receives more than 4 times more research funding.

But why look only at CFS versus Lyme? There are plenty of patients suffering from both, or even suffering from one but misdiagnosed with the other. We need to see more research done on both those disease. And anyway, both are in the little leagues compared to the Big Neuroimmune Disease.

My researching brain is not what it once was but I've done my best to read the CDC's 2009 budget request summary here

It looks to me like with an estimated near-equal number of sufferers, the CDC allotted over 200 times more money to AIDS than to CFS.

Now, maybe you think AIDS is more serious. But CFS kills as surely as AIDS does. It even kills in the same way that AIDS does: not directly but through secondary diseases such as rare cancers and heart failure.

The difference is that CFS kills more slowly. Instead of getting sick and either getting treatment or getting dead, CFS victims get sick and stay sick for decades: sick and disabled, drawing on government disability funds and social services. Taking a long time to die, we cost a whole lot more in the long run.

Well then, do we suffer less? Is the spending lower because we just aren't really that sick? More than one doctor has publicly said no, ME or CFS patients actually are worse off:

“… I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
-Dr. Nancy Klimas, HIV and CFS Researcher and Clinician -   as quoted in the NY Times Oct. 15, 2009

So there's really no reason for research funding to be so low for ME (or as the funding bodies insist on calling it, in this country, CFS). But the bottom line is, there's more than 200 times more money being offered for the study of AIDS, even though the patients already have treatments, the pathogen and method of transmission is already known and we already know how to prevent and to test for the disease.

ME patients have no proven treatments. The cause of the disease is still in question. Tests are being developed but meanwhile, not knowing how it's spread, we don't know how to prevent ME/cfs. So of course anyone can see that we ought to be spending more money at this point to research, and prevent the spread of, ME (or cfs).

Is it just that researchers aren't really as interested in boring old CFS as they are in exciting, glamorous AIDS? No. The glamor is where the dollars are. The motivation is where the dollars are. Even for researchers who have a strong interest in CFS research, the bottom line is, the ability to proceed is where the dollars are. Nobody can research in a vacuum, or without a lab and a paycheck. As long as there's next to no spending on CFS, there will be next to no research. That's all.

As for the Rogue Researcher part of the story, it's true that sometimes we're fortunate enough to have a researcher and/or clinician come along who cares so much about the plight of sick people that they put extra passion and commitment into their work. Those are the sorts of scientists about whom hero movies get made sometimes, and what is wrong with being a hero? Why the effort to portray the caring and committed as looking ridiculous to other scientists and being bothered by the very patients they're helping?  The most committed and caring researchers need exactly the same financial support that a cold and uncaring researcher would require to carry out scientific inquiry.

So what researchers want is the same thing patients want. We share a common goal: a reasonable budget allotment for solid science to examine the biomedical workings of ME or, if the funding agencies prefer, CFS.

That's the real story. Researchers and patients require more funding for ME/cfs research. If there is an urgency in our demands, it's not because we want to push science through too fast and end up with shoddy results. It's because strides are being made and should be followed up. Studies show the effects of exercise on cytokines, the presence of unusual proteins in spinal fluid, neurological damage evident in autopsies and yes, retroviral infection in a majority of well-defined patients. These findings should all be followed up with more research. Other avenues of biomedical inquiry should be pursued. What little funding there is should not be wasted in repeating dead-end psychological studies. Funding should be increased and allocated to serious neuorimmune study.

The urgency is also because more people are getting sick every day. To help those sick, and to keep healthy people well, patients and researchers alike demand fair funding for the study of this devastating disease.


  1. Well done Kassy, only that is Part of the story.. .....the part where there ARE those that do NOT want the newly discovered 3rd HUMAN Retrovirus to be the cause of CFS or even linked, because it is cheaper for the Insurance companies to keep CFS under the Psych label prescribing GET and CBT, and the many Patient Groups that also do not even mention the 3rd Human Retrovirus.. THAT is the part that MOST of the researchers and patient .orgs are arguing about with the Patients about..

    Until we find a Patient Org that will even Advocate for us ALL, and that INCLUDES those of us with XMRV+, even with antibodies, and their children that are also testing Positive, Please do NOT tell me that ALL Patient Orgs are of equal Value or Just and Fair.

    And Yes, many many Lyme patients and even 25 % of breast cancer have XMRV and family lines are showing links to Lymphoma patients
    and Autism. This is MUCH MORE than just ME/CFS just as HIV was more than one of the opportunistic infections that grabbed on and eventually killed any HIV+ patient.

    We are on our 3rd Generation now, so this is costing the world's economies one Heck of a lot of money and human quality of life let alone family life and hurting every countries GDP.

    WE are the ones left stick in the middle suffering for almost 3 decades now.. some with NO medical benefits or disability income and just falling thru the cracks.... We might as well have been washed out with the tsunami.. THAT would probably make the Insurance companies, and the Health Depts and the Power Grabbing Patients Orgs feel a LOT Better.. But guess what we wont and we are STILL HERE.. So Try again.. and keep working until you get it Right, OK ? Some Doctors that are XMRV+ are already using themselves like guinea pigs because the government agencies are so late in even starting to work on this.. They purposefully discredited Elaine DeFreitas and the Patient .orgs just let it happen.. NOT THIS TIME, because TOO Many of us are testing Positive ALL over the world and in 4 different studies now..
    At this point, I ONLY Trust the Researchers that ARE working for us.. everyone else will need to EARN my trust.. cuz the .orgs have lost it. Except for one that is.. but they are BUST doing Research.. and not listening to the babbling...

    Yes, ME/CFS and Lyme and the other diseases need to have research done, but so does XMRV and it needs its OWN SEP> HIV has one... Why not XMRV ? How many need to Die before we qualify for a New SEP for a new Pandemic ? Hello NIH > XMRV SEP Please.....
    NIH Patients and Families are waiting...

  2. Spot on Kassy; well-written. There is no conflict of interest. The journalists just like to put a negative spin on things - it's fashionable. The bottom line: we need more research funds now.

  3. Monica Deitell, MD14 March, 2011

    Thank you for summing this up so well. I agree that focusing on the "drama" as if there is a conflict of interests is divisive.

    I think it's a disservice to those of us with CFS/ME. I believe it alienates a lot of "non-sick" readers and makes it seem, as you say, that there is this high drama.

    Except as expressed by a vociferous minority, with an almost hysterical quality, it really doesn't exist, which I think really does the CFS/ ME community a disservice as a whole.

    Thanks Kassy for your rationale presentation of the situation.

  4. PS: I do not want to make it seem like I was aiming that comment above AT Kassy~
    to the contrary.. I agree with everything she said.
    I was simply trying to tell the other half of the story ~ a PS: to the blog so to speak... OK ?
    I care dearly for Kassy and she knows it. ♥

  5. Gotcher, Angel! The story of WHY there's not a fair share of funding for ME research is a whole 'nother tale which others can tell better than I can.

    Thanks, Nicky and Dr. Deitell, for your kind comments too.

    It just seems to me so silly to portray patients and researchers as being in opposite camps but there's a lot of that going around these days. The effort to imply enmity. It's like that joke about the CEO, the Union Rep, the unionized workers and the cookies.

  6. I agree. Everyone has to fight for quarters thrown under the table - there is nowhere near the funds needed for this disease. It has nothing to do with the "quality of the proposal," as some would have you believe. It is what it is: unequal allocation of funding, period.

    That problem starts at NIH. But it cannot help that CDC has been misleading both the public and the govt. about this disease for a quarter of a century. Just a silly disease of silly women - nothing to worry about here.

    It has to end. At some point too many people will have it. How much does that take? I am reminded of Don Francis' explosion at the blood products meeting nearly three decades ago, when they already knew hemophiliacs were getting and ding of AIDS in blood products. "How many people," he asked, "before it becomes cost effective for you to do something?"

    How many people? I thought a million would be enough, but apparently 4 million isn't enough. How many people?

    Mary Schweitzer

  7. Thanks Kassy... a great piece.

  8. Thank you, Mary and Anony!

    Yeah, the cost/benefits analysis approach is horrifying but there it is. Surely by now we're costing more sick than we would cost to research and treat?

  9. Excellent as usual, Kassy. Who says patients can't be rational.

    How do we get this funding? By making sure the public knows the danger they are in; we must have them advocating with us. I believe the excellent comments made by patients have helped the tide begin to turn with the public. I see more and more of the "healthy" beginning to see what they may be getting exposed to.

    Let's keep educating the general public: when they start to realize their peril, it won't be only the patients who are requesting more funding.

    Carry on, patients: you do an excellent job of explaining the inexplicable. Instead of being Impatient Patients, let's be the Educating the Healthy.

  10. Outstanding post, Kassy.

    The only message we have is:

    We need funding, funding, and more FUNDING for the WPI.

    Where the money goes, researchers will follow.

  11. Thanks for a great informative article. Did you by any chance leave it as a comment to the article in the Washington Post? It would really help for people to see such a rebuttal of sorts to the article.

    Thanks again!

  12. Well said, Kassy, and thanks for turning up that graph. I had seen Pat Fero's numbers on CFS spending, but that chart adds a great deal of emphasis. Reposting... -Jocelyn

  13. Also, one thing I thought about that WSJ article that seemed to pit "us" vs. "them" was that it omitted entirely how badly done by we've been for 20+ years. It made it seem like there was no good reason for our impatience, suspicion, or distrust, when in fact there is plenty! I would love it if Amy Dockser-Marcus read _Ostler's Web_ and wrote about that.

  14. I always love the way you think, Kassy...the epitome of reason.
    Funding is the bottom line. We need to find answers.
    The fact that these new articles are also stating that finally CFS is being considered a real illness disturbs me. I thought that was something we established many years ago. It makes it feel like we're starting from scratch, deja vu all over again.
    For me, I do feel an urgency. It's not just that living this disease is not a fun way to live, it's that I am getting older. If we don't get funding and research going NOW, it's going to be too late for me and all of the other "yuppies" out here slowly dying of this heartless, relentless disease. However, I am not whining or calling or writing researchers. I am working in ways I feel appropriate to promote our cause.
    Thank you for writing your blog. You write the things I think, but cannot organize in my very foggy brain.

  15. Thanks for the comments, all. Sorry I can't respond to each individually but since some mention an article here or an article there I will ad that I didn't want to single out any one article ... there were two or three recent ones that struck this same note with me, of pretending there's a fight between patients and researchers, and I hesitated to comment as they may not have intended to sound that way at all. This is just my way of putting the thought out to the world in general but if you want you can link them. I'm super wiped out after wrting yesterday so am down flat for today. Sorry if that may seem wimpy but wimpy is exactly me with this illness. Can not deal with animosity and don't want to create more, just want to point out hey, did someone think there was animosity between patients and researchers? Cause there ain't! Okay, serious rest time now, best possible comfort to you all.

  16. Excellent blog post! Our message to the CFSAC, no less than $150 million for BIOMEDICAL research! Anything less, is a slap in the face.

  17. I love reading your blog, Kassy. Always so well thought out and to the point, which is sooo nice for the brain foggy folks. Thank you!!!

  18. Amazing writing and right to the heart of the matter on something so frustrating. I'm going to share this with a few friends.

  19. Thank you for doing what you do on this blog. Out of all the ME/CFS/XMRV blogs I follow, yours is the one most worth reading to me.

  20. Wow, thanks. I'm honored. I'm aching so bad today I can barely put hands on keyboard to type, then have to go rest, but these wonderful comments let me know writing was worth the effort, and the PEM. You encourage me to do it again soon!

  21. Please do it again, Kassy. I can understand why you ache - you hit this one out of the park!

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