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An Interview with Cort Johnson by Richard Usher (May 2007)

What do you see as the most necessary steps needed to move forward with CFS research, funding, and awareness?

In the U.S. we need to convince the powers that be in the national research institutions to make a serious effort at studying CFS. CFS is now estimated to cost the US economy $25 billion dollars a year yet the NIH and CDC each spend from about 3-7 million dollars a year on it. This is a travesty. CFS actually has much higher indirect economic costs than does asthma, a disease the NIH spends over $100 million dollars a year on. If we want to break the back on CFS in our lifetimes we need to dramatically increase CFS research funding, we need for the major research institutions of the US to give it the emphasis it deserves.

It’s not only NIH and the CDC. We also need to get the research community as a whole better engaged. The medical research community is not banging on the doors of the NIH to get CFS research funded. This is why we need the NIH to fund research centers run by competent CFS researchers that can begin to start pouring out studies. The NIH is waiting for researchers to come to them - that doesn’t seem to be happening.  We need the NIH to more pro-active in this area.

This is not to say CFS is treated better elsewhere. Both the NIH and CDC spend far, far more money on CFS research than do research institutions of any other governments and both are engaged in very innovative, very complex projects. They are way ahead of the curve in that area. But neither program appears to have much institutional support. The NIH CFS research program has been bounced around and it ended up in a small Office that doesn’t have the funds to support it. Meanwhile many at the CDC still apparently blame Dr. Reeves for giving the CDC a black eye in the late 1990’s. While CFS patients are bashing the CDC and NIH CFS research programs on one side, the CFS researchers running those programs are probably getting bashed on the other side as well!

It’s on this other side that CFS patients can help. By ensuring that our patient advocacy organizations (the CAA and IACFS) are strong and by becoming strong advocates for CFS, CFS patients can produce the kind of political pressure that will make it possible to maintain and increase the scope of these programs.

The CFS community faces many obstacles; problems with diagnosis, treatment and disability are the most immediately obvious to CFS patients but I think the greater problem in the long term is a lack of credibility in the scientific community. I don’t what else can explain such a meager research effort by our public institutions. Everything else is there; the need is certainly there - simply the economics of this disease cry out for an extensive research effort and they are well known – and we have ample evidence of numerous biological abnormalities in CFS yet this disease continues to treated like a minor problem. Either researchers are not interested or they simply fear taking on such a controversial subject. CFS has yet to be embraced by the research community as a whole.

There are several reasons for this, first among which is that CFS has not been an easy to disease to study. The poor name is only the starting part; we would have gotten over the name a long time ago if CFS had been more amenable to study. Although CFS researchers are now honing in on replicable abnormalities they have over time had lots of problems replicating study results. CFS also appears to be studded with subsets – an entirely expected situation given the vague definition – but one which the scientific community has only recently started to really look at. It doesn’t help that researchers haven’t been able to focus in on an obvious area of injury as they can in many diseases. CFS appears to be very complex disease – perhaps even a new order of disease with its multi-systemic interactions. These are research areas the medical community, despite all its sophistication, is just beginning to really examine.

What does the CFS community need to do to insure a greater impact in the area of awareness?

We need to do what any advocacy group does. We need to empower groups like the CFIDS Association of America (CAA) and the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) that have an ‘in’ on the national level, and we need to support the local support groups that can interact on the state and local level. We need to be informed of the important issues facing CFS and be prepared to act on them when the opportunity arises. We need to be able to build up enough political power to effect change on issues ranging from disability to research to physician education. We need to make it impossible for politicians and researchers to ignore CFS. We’re obviously making inroads society-wise, the increased media coverage given to CFS is evidence of that, but that hasn’t yet trickled down to the national research institutions and they are where the big bucks are.

There are several good avenues; there’s internet chat groups (CFSExperimental group at yahoo groups.com, Immune support), there are several good websites; the MERGE and CFIDS Association of America websites have good readily understandable overviews of CFS research and the CFS Phoenix website I run has, for the more ambitious CFS patient, the most extensive research overviews on the web.

There are several newsletters as well; Immune Support has one and the Phoenix Rising newsletter is unique in its commitment to readers up to date on all the major CFS research. This newsletter examines each months research findings plus CFS news, interviews and stories. There are also frequent special editions; the last ones covered the IACFS conference in detail and prior ones included interviews with CFS authors and advocates. A good way to keep up to date on CFS is to subscribe to Phoenix Rising.

The FMS-Global news feed keeps CFS up to date on all the news on FM and CFS from around the world. The CAA’s grassroots center can keep CFS patients up to date on important advocacy issues and the CAA has a new media page that tracks CFS news stories on TV, print, online and radio. The CAA/CDC news campaign has really taken off and there’s a lot to see there.

Can you tell us about the recent IACFS Conference, your news letter, and future projects?

People who have attended this conference in the past came away quite excited at the progress that’s being made just in the past two years. For the first time really we appear to be seeing broad areas of research come together. We also saw for the first time what a large effort the Japanese are making. CFS research has been mainly centered in the US and the UK and it’s great to see another country take it up in a big way. We saw a new test that may be able to finally prove disability in CFS, antiviral treatments that appear to be very effective in a subset of CFS patients, a new central nervous system disease model, what may be a amazingly cheap and easy way to diagnose CFS and many others. There’s a lot of innovative research going on right now.

You can get several good summaries of the conference at the CFS Phoenix website. The Phoenix Rising ones were produced by a patient (me) for patients; these are the most extensive; they were the only ones to cover the two days of the Patient Conference and the five days of the Professional Conference. They’re broken up into seven parts – if you want to get up to date on CFS research and treatment I really recommend it. You can also get perspectives from two physicians; Dr. Vallings and Dr. Lappe.

The Phoenix  Rising website contains the most extensive research overviews of CFS on the web. They include synopses of an entire book (CFS A Biological Approach by De Meirleir and Englebienne), an enormous section on RNase L and CFS, a series of papers on Orthostatic Intolerance and CFS, the Brain and CFS, Channelopathies and CFS, the Pharmacogenomics Papers put out by the CDC last year, a Pathogens and CFS section and much more. These represent the understanding that I, a laymen and CFS patient, have of these subjects. Although I try to present them as simply as possible they can be quite technical at times. This part of the website was born out a burning need I had to try and understand this disease which has so altered my life.

Next up for the website and newsletters are more interviews with prominent CFS researchers, physicians and advocates, a paper on EBV and CFS, one on the CDC’s attempts to define CFS and one on the NIH and CFS. I’m also going to try to update the appearance of the website, a process that fills me with dismay but must be done.

May 2007